As someone with like pretty annoying ADHD, I too, relate. Hello, relative disordered fella! ADHD and autism are all kinda similar so I consider us relative disorders lol.
Of all the things I struggle with daily, why is my autism the only one classed as a disability? I really don't think that being obsessed with staring into eyeballs while talking about inconsequential things is the One True Way to be going about things!
@@mouseluva well when I got my diagnosis, they said it was in the process of being changed from disorder to condition. But obviously it's not in common use yet.
i'd imagine race also impacts a person's ability to get treatment for their chronic illness. there's a long history of Black people receiving less diligent treatment than their white counterparts- i.e. a doctor might actually investigate a white person's symptoms while telling a Black patient with the same symptoms that it's not a big deal.
it used to be a huge thing that racist white people thought black people either didn't feel pain at all or felt it a lot less than white people. unfortunately that's still going on today, even if it's a bit watered down. edit: i'm sorry i don't think i worded this too well. i meant to say that today, it's not as bad as it was, but it's still really really astonishingly bad.
it definitely plays a role. while it wasn't specifically about disability, john oliver did a great segment about medical biases, specifically toward women and black people. he also had wanda sykes for part of it! i'd highly recommend it if you were interested in watching it.
On top of the "not feeling pain" thing, when the war on drugs started to take off in the US (I don't know if the same thing happened in other countries) doctors and nurses would assume that every black person was just trying to get their hands on more drugs rather than treating us for our actual symptoms. This still persists today.
@@locsoluv94 it definitely happens elsewhere, the United States has a lot of medical, social, and cultural influence on other countries through many sources, from academia to politics to popular media.
I've recently started saying "I'm intermittently disabled by overlapping chronic illnesses." I hesitated for a long time using "disabled" in any form, because it felt like an intrusion into a space I wasn't entitled to. Once I attached the word "intermittent" it all snapped into focus for me.
I very much resonate with this 💖 (the “that’s for people with bigger problems”) is a weird mental block that somehow doesn’t occur probably applies to me when going to the grocery store, eating non microwavable food, or leaving my house just isn’t going to happen some days due to chronic illness. Somehow “disabled” seems too far though as sometimes things work (ish)? Ugh words 🤦♀️
@@cuteCassandra96 most disabled people have good days where they function more than other days. Disability is a spectrum that covers a wide range of issues and functionalities.
I have a chronic illness, and I'll say "I have a chronic illness" not, "I'm sick" or "I suffer from...". I really hate the word "suffer". I mean, I do suffer, some days, but I'm a lot more than that, too.
Ooh yes I get you! I have asthma and I never realised why “asthma sufferer” makes my skin crawl until my dad, who has RA, went on a huge rant about how he hates when people say, “aw he suffers from rheumatoid arthritis” and it opened my eyes so much! It’s something we/you deal with and have but it’s not something we SUffER from because life can still be good!
I know what you mean about the word"suffer". I've heard that journalists are told not to use use it, and instead say that a person has an illness instead of suffers from an illness.
@@manifestationsofasort like there are days when you “suffer” but overall you don’t? Because yeah I get you there are definitely days when flares make you really suffer!
"women's health issues are seen as most worthy of treatment when they affect their fertility" my uterus, one of my normally-functioning organs: 🤪✌🏻 my depression, social anxiety, adhd, hypermobile eds, possible mitochondrial disease, digestive issues, and allergies with no discernible cause: 👁 👄 👁
"hey my periods are super irregular" -> "oh here's three options to choose from to regulate your cycle, also let's do an ultrasound to determine of you have pcos" "hey nothing means anything anymore and i have no hope for the future" -> "cool cool, lmk when you're actively suicidal so we can hospitalize you for a week and teach you things about mental health you already know, also here's a misdiagnosis and meds for that"
as someone with a fatigue disorder, EDS, adhd, amd digestive issues - have you heard of MCAS? i got diagnosed with it due to the weird allergy part and treatment helps all the disorders (incl surprise gluten intolerance that nobody connected).MCAS travels with these other disorders
‘Hey I’m 17 and turns out I have a hormonal problem and PCOS. I feel like shit, look 90, and can’t do daily life.’ Doctor: ‘ah, but will it affect your fertility someday?’ Me: ´I’m 17. Calm down. I just want to be able to have a life and you’re only worried if I will be able to make a baby.’
I misheard chronically ill as "comically ill" which was...well, comical, if not downright tragic 😅🙀🙈💀 ...no, not a comment on your pronunciation Jessica, just a comment on my own shortcoming in this case 😅🙀🙈
@@butterscotch2730 sometimes in my head Oscar Wilde and Stephen Fry are the same person. Humour-wise I don't think I'm wrong 🤔🤔 though being American I'm sure I'm missing some of the finer nuances
Still laughing about "good looking potato." You have such a way with words. And yes, it's complicated, what to call what our bodies do. I'm legally blind in one eye which isn't a problem unless I'm parallel parking. I have migraines, too, but again, it's not apparent unless I'm in the throes of one, then you want to stand back. Really appreciate your educational and entertaining videos. Oh, and I haven't thought straight for a very long time. :)
@@anhaicapitomaking8102 I was born this way so it's different for me. Mostly it affects my depth perception so I have to wait longer than 2-eyed people to pull into traffic. I've been driving for almost 50 years and I've been fine.
@@JamieAndersonMusic good to know, I will get back to it one of these days. Also, I live in Italy and people drive very bad. Anyway, thanks for sharing your experience
To paraphrase Captain Holt (brookyln 99): When someone steps up and says who they are, the world becomes a better place. Context: one of the main characters comes out to her parents who have a hard time accepting the news but I feel like it applies to this video *Part of the chronic illness gang - also, I found out I'm eligible for dsa on my student finance for my phd ☺️
"Historically, peanuts have been used as one of the ingredients in dynamite." Cool, so one thing that would kill me has been used as one of the ingredients in another thing that would kill me. How fitting.
I speak of myself as "brain injured," because I would have been pretty completely NT if not for severe, relentless childhood abuse and torture. Complex PTSD (what I was left with) is more of a brain injury to me than a mental illness. Sometimes it functions as an invisible disability, but one that I can to a certain extent recover from. You're right, Jessica. It's complicated.
@@ianpitzerds and @Veevee306 both, as someone who also has C-PTSD (not autism related but still from prolonged childhood abuse) I can truly say that I completely agree with that explanation of how you feel about it being a brain injury. Also as the parent of an autistic child I am absolutely horrified by the way that people have treated their autistic children, and those “treatments” that are straight up torture. And although am grateful for the explanations of people who have experienced it first hand, and have put it out there as a way to hopefully spare others potential harm, I still absolutely hate that it ever happened to any of you. Anyways I’m not exactly sure what my whole comment was supposed to convey besides the fact that it really really breaks my heart that you have gone through that.
I dont know if I have CPTSD, but I do think that I do, because I was repeatedly sexually abused for like 2 years and i didnt tell anyone for 8 years after... and I have most of the symptoms, but whatever it is that effects me it suCKS so much. Like... I was listening to music once, than I dissociated so much that i almost went unconscious? Idk.
I have CPTSD and then physical illnesses that may or may not be a reaction that my body had to the abuse/trauma because we don't know for sure if developing chronic pain/illness years after abuse is actually because of it, so the question i ask myself every day is: Is it a flare or depression? Or anxiety? Or the nightmare? Or something I ate? Or that I went for a walk? Or something I didn't eat? Or or or???
One of my trauma related disorders is technically mental, but it manifests as seizures and sometimes blindness. It very much straddles categories of disability and illness.
I also have CPTSD and for a long time didn't give myself much grace for how much it affected me, like I would beat myself up about getting bad grades and other people would have to remind me that actually I'm doing well which is extra impressive considering I'm dealing with a lot. Anyway then I went to a mental health first aid course and we did this activity where we compared how disabling different physical and mental illnesses were (not to be like who wins, but to be like hey take mental illness seriously plz) and they said having severe PTSD is as disabling as being paraplegic. Having PTSD effects someones life/health as much as being paraplegic would, and that just shocked me to my core because like I wouldn't be rude to someone who is paraplegic for having difficulty with stairs or other physically inaccessible things, but I would get mad at myself for struggling to do things that involved my triggers. It was just a weird moment of like well shit my pain is real I should probably be kinder to myself.
I generally like to use the term "neurodivergent" because mu first language is italian and, although it is utter bs, in Italian the word "disabile" is almost strictly confined to physical disabilities unless the context is a medical one p. s. unrelated, but in Italy there is such a thing as a disability percentage that determines if you will get benefits and helps and to which degree you can be assisted :)
In Quebec they use 'personne en situation de handicap' (Person in a handicapped situation) and it's pretty vague as to who they include in that grouping. The percentage thing is or was common in Canada, I don't know if it's still the case.
As far as mental health and disability/chronic illness: I definitely agree with the matter of the difficulty that comes with waking up one day "healthy" and then waking up the next day "disabled". I really truly believe that any diagnosis of a chronic condition should lead to an automatic referral to, if not therapy then at least a support group. It took me eight months of coping alone to discover that there were other women out there in Facebook support groups who had my condition, women who had the same symptoms as me that my doctor was dismissing, women who had the same stories as me. And I spent the first two days after joining that group just reading posts and crying because I'd spent eight months feeling stupid and annoying and hysterical after every time I had spoken to my doctor but every single thing I had done or said or felt was here written by other people and had a dozen comments from other women up and down the country saying "Yeah that happened to me too, this helps though so you can try it out". It would have taken my doctor 30 seconds to say "Hey this is the condition you have. There is a National Society that has a lot of information about it on their website and links to support groups for people who are living with it." Instead no one even explained it to me. I had the condition for three months before I even found out it was chronic and incurable because no one had told me in the hospital and I thought I was doing the right thing by not Googling it (and when I did Google it it was such a fucking broad diagnosis it was functionally useless to me anyway trying to figure out what it was on WebMD and the NHS website). Chronically ill and disabled people need to be taught how to cope with being chronically ill and disabled. Not just given a name of a condition and a 3 month follow up appointment.
As much as I love therapy and support groups for what they can do. I think you need to be careful when talking about automatically requiring people to have those things as someone who has trauma from being forced into such groups as a child. There are some very negative effects that can occur when it is not the patience desire.
I completely agree with making it available, but not mandatory. Mental health is health. Everyone can benefit from support or care around a stressful situation, and a physical health challenge is definitely a stressor, but I wouldn't force it on anyone.
@@ArtemisScribe I am very glad you found a support group that helps you. I do think that's very important. I was put into a multiple pronged program which on the surface sounds great. But in reality had a lot of problems particularly as a child who was put into an adult program. I personally found the Internet to be a better resource for how to live with my conditions then any doctor and I've had some very good ones as an adult.
@@GeekmomD The way I read this was not that it should be mandatory for people to go (definitely not) but that it should be mandatory for doctors to tell patients they diagnose with chronic illnesses about support groups to help 👍🏼
It's frustrating when I can go to the doctor and be fine and they don't say anything is wrong when I honestly struggle but for that moment I'm ok and they don't see it
I got told my Urologist, who has met me all of three times that (and this part is a direct quote) "you are the most healthy ill person, I have ever met". When I asked him what he meant he said I didn't look ill. Seriously dude? You are a doctor, you should know better!
Never identified (is that the right word) as having a chronic illness until this year, despite having asthma since I was a baby, because I was quite lucky in that I “just” got one or two chest infections (or maybe a lung infection) every year and can still do sports etc as long as my inhaler is with me but when covid hit I was suddenly thinking, “oh actually i really need to watch myself here because I have a respiratory illness that is never going to go away, even tho I’m mostly fine.” And THEN I realised that most people don’t lose out in 2-4 weeks of work/school/uni every year because they can’t breathe properly. Your videos have been a weekly highlight of mine for years because of the vintage fashion and the disability education (lots of my close friends and family members are either disabled or chronically ill) so even though no one asked for my thoughts, this video seemed like a very good and safe place to write them out. Tl, dr: I’m asthmatic and never really thought about it too much even though it affects my life everyday until Covid hit.
It's really interesting that other people also realised that their asthma is an actual impactful chronic illness this year. Definitely makes me feel less foolish :D
@@pucklian6499 aw yeah for sure! Think this year put living with lung conditions into perspective for a lot of us who have asthma etc mildly - moderately because for the first time ever we were at high risk of something unknown due to it. TEAM WHEEZY X
@@pucklian6499 I did but then I wasn't allowed to take the vaccine earlier along with people with other comorbidities because I hadn't been hospitalsed in the last six months at the time... 🤦🏻♀️
When my heart rate never dropped after birth my mom was told it was terminal. When I lived past the age the doctor had picked for it to be terminal it became a “heart condition.” At 39 I got told it was a BIRTH DEFECT. Same person, same heart, different doctors. I’ve given up trying to figure out the label; currently I go with “I’ve got this funky heart thing.”
I have a congenital heart defect too, diagnosed at birth. I’m glad you were able to finally get a clear diagnosis! It’s hard to find a real label. Sometimes I say birth defect, heart condition, CHD, chronic illness, etc. Hope you’re doing well💗
I was diagnosed with arthritis when I was 4 and I say I'm disabled or a wheelchair user depending on the situation. I recently heard the term Spoonies. While I agree with the "spoon metaphor" (my physical long-term illness causes fatigue), I can't bring myself to refer myself as a 'Spoonie'. I find it a bit cringey and cutesy but each ti their own. I feel the same about words like 'handi-capable'.
The spoon metaphor is great for explaining to other people how my mental health issues affect my ability to do things, but I would never call myself a Spoonie. I feel like that term diminishes the severity and medical reality of my condition. It's not a quirky personality trait, it's a legitimate medical condition. But maybe I'm too uptight, lol.
Yeah I use the metaphor all the time but don't call myself a spoonie. Much in the same way that I know that my being autistic heavily shapes how I experience my gender identity, but don't choose to use "autigender" which some autistic people use to describe their gender (usually boils down to ??? gender). I do say disabled because I have a variety of different things wrong which impact my daily life to an extreme degree. Or extreme to me anyway. And they've been things I've pretty much always had, just only now have names for. Some have got worse over time (dislocating joints and muscle pain associated with said joints being silly) and others have just always been there and always will. So I felt it a lot when Jessica spoke on needing different language to talk about "had and lost" and "never had, never will, may even get worse". Like so much of mental health stuff revolves around "recovery" but if your mental illness is something you are born with, how do you "recover" from it? There is managing it on a day to day basis, but a life-long thing doesn't just clear up.
I call myself a spoonie because it makes me feel connected to other people who have to ration super limited energy in a way that's really hard to understand for people who have never experienced it. I never saw it as cutesy before, since I never saw it as anything but for other spoonies who already get that it's not remotely trivial. I don't see Aspie or Enbie as cutesy either--in my brain it's just a way to say "I am like you" and nothing like the patronizing vibe I get off "handi-capable." It helps knowing that "spoonie" was coined by us spoonies, not by someone outside labeling us. In fact, I kinda like that it's opaque to anyone unfamiliar with spoon theory.
@@crosita1 a perfect example of why labeling is so difficult. It's great that you have a community of like minded Spoonies and that you get comfort from the name (I'm not being condescending, I think whatever makes a person happy and helps them deal with their situation/condition is valid.)
I usually say “medical conditions.” Migraines, Diabetes, IBD, Anxiety/Depression. Among other things. Which by themselves would be manageable... altogether, all the time. Is nope. Just nope.
Watched the video “I was wrongly diagnosed” and I was shook at how many things I have with Ehlers-Danlos syndrome as you were listing. Now I am in physical therapy and working on it because I heard about it here! It was so nice to put a name to it too! Also have chronic fatigue! Jessica is my British twin!
From being terribly confused between chronic illness or disability as jessica illustrated the differences The moment jessica said chronic illness is a disability gave me such a sense of clarity. Absolutely loved the video and thank you jessica for explaining the topic so well.
I usually use "disabled" for brevity's sake...however, in the US, "disabled" often makes people think you're on Social Security Disability Insurance. And I am not (yet...sigh). So, I only say "disabled" if I'm speaking to someone who I think won't be an a$$hat and go on an anti-disability rant. If I don't know the response I'll get, I'll say I have a connective tissue disorder and usually people don't ask follow up questions to that, lol. I'll just add, for brevity's sake, that my disorder causes me to have a number of problems and that's typically enough to stop people in their tracks. But sometimes there is a nice and curious question who asks thoughtful follow-up questions, which I am happy to answer. I do understand that people are hesitant to ask too much of the disabled because they are afraid to offend us. With my family, I just refer to "before I was sick" and "after I was sick" even though I've had problems my entire life. There was just a period of time when I got worse very quickly so it's just easier to treat that as the time "I got sick" with those who are very aware of all my problems.
Honestly I feel validated by being on SSD. I don't have to "justify" not working to randoms because I already did so to the US Government's satisfaction. And we pay into the SS system from every paycheck very specifically to have coverage for disability. So while I don't meet many people who would be jerks about it, I feel like being governmentally recognized gives me so much confidence. I studied for my disability application extensively and intensively and still feel massively fortunate that I got accepted, especially on my first try. Something like 2/3rds of people have to appeal twice before that happens. So not being on it definitely doesn't invalidate you either, but for me at least I felt it's made things easier socially, even if it's mostly just affected my internal confidence.
Don't you just despise "anti-disability" as an additional political stance right-wingers take, along with "anti-immigrant", "anti-tax", and you know how many others they like to hate on. Why don't they add "anti-elderly", I'm sure some of them will when it's the next thing they think is "OK" to rant against. They really have had their ire misdirected in America, as far as WHO is actually making people's economic lives unhappy. HINT--- It's not us.
Ugh I feel this so much. It's so hard here I have my hearing in a few months. I still say I'm disabled because I don't feel like telling everyone what's up with my health. And usually I walk with a cane anyway so people haven't been too bad, but I get a lot of people being mean about my age and being disabled. I'm 28 and people are so messed up over the cane. 🙄 I wish you good luck in getting disability, I'm sorry people are asshats. It would just be great if people were a little more empathetic sometimes!
Since I'm not fully diagnosed yet because no one can tell me why I feel horrible constantly I use disabled. Just wish I could get answers. 😔 I have EDS but that's not the entire picture.
This is completely me. EDS and POTS, and I use the word disabled because at the end of the day I don't really know much about why I've felt awful since middle school. I do know the end result is me being disabled.
I’m both chronically ill and disabled. I have insomnia as part of autism, allergies, asthma, diabetes type 2 and hypothyroidism. Oh and migraine and disc hernias in my lower back. I’m pretty sure the insomnia was a BIG contributing factor to developing diabetes in the first place. The combination of the “things” also cause me to get virus infections more easily. Honestly the list of “things” is generally longer but most of the not mentioned things is directly caused by the things mentioned and I can’t be bothered to remember all.
For me : Chronical illness / health condition : need medical care (therapy, treatment...) Disabled : need accessibility (accomodations, help, accessible place suiting your limitations and needs...) I think many if not most disability are also health conditions (wich is why I 100% agree that disability write includes chronic illness issue), but that the opposite isn't necessarily true. For example needing glasses or allergy medication is a health condition and can technically be considered a chronic illness, but in many case with the right treatment you'll do just fine. That also mean that one diagnosis is not necessarily a health condition and or a disability for everyone. My autism is disabling but doesn't require medical care, but some other autistic people do need some related to their autism (and that's fine !) My endometriosis needs health care, it's a chronic illness but isn't disabling when I'm on my treatment because it works perfectly for me, but it is for other people whose treatment don't stop the pain. And my HSD is both a chronic illness for wich I need treatment and a disability for wich I need accessibility With those définition, I'd add that when a health condition cannot be managed with medical care consequently almost always is a disability because you need other type of help and support to live with them.
I feel like this is perfect and totally how I've been looking at things without even knowing it. Like I need accommodation with my Tourette's but not medical treatment and with my mental disorders and ME/CFS, I need both and this totally explains why I thought of my Tourette's in a completely separate category from my other "issues". I would also switch whether I referred to my ME/CFS as a chronic illness or a disability based on the circumstances even though I always consider it to be both and I couldn't have explained why until this comment. When I'm discussing the medical treatments that I use for my ME/CFS I usually refer to it as a chronic illness and when I'm talking about needing accommodations because of it I usually refer to it as a disability. This is so long, but this comment honestly blew my mind like it explains so much.
Exactly. Its totally down to how it affects the individual. I'm also autistic and it does disable me, but the only "medical" help I need in regards to it is getting appropriate talking therapy that takes that into consideration for helping with my mental health conditions. Which technically classes more as accessibility. Though for me, I would say that my eyesight is disabling. I have to wear glasses every day due to severe short sightedness and astigmatism (had one optician be so excited by my degree of astigmatism as she'd never seen it so severe outside of a textbook). If I knock my glasses off the bedside table when I'm reaching for them, that's it, I'm screwed unless there is someone else who can find them for me. I can't wear contacts as they don't make my prescription, my head is ridiculously tiny so I only have a very small (currently zero - yay) choice of frames I can actually wear... I can't read number plates on cars the required distance away whilst wearing my glasses so couldn't legally drive. And my eyesight is likely only going to keep on getting worse as I have family history of relatives going blind and my eyesight was more severely bad when I was a child so... Like it really does disable me because I have to be very careful what activities I do due to increased risk of detached retina. My eyes are also super sensitive to light so that heavily impacts how I'm able to interact with the environment around me. Like going into shops is HELL due to how bright everything is. So I basically don't go anywhere where I can't control the lighting of the environment around me. Basically means I don't leave the house except for very rare occasions like the special treat of going to a doctor's appointment. The only reason people don't class poor eyesight as being a disability is because glasses wearing has become so normalised, acceptable and even fashionable over the past 20 years. Growing up I was still bullied for wearing glasses because it was seen as a bad thing to need glasses (just like how lots of other disabilities get treated still). Like today its possible to buy glasses purely for fashion purposes. Honestly if people were doing that to other disability aids like wheelchairs, people would be in an uproar about it. Also fun thing is that the fashionable status of glasses has basically made it so that frame shapes change on a whim. Which means if you are like me with very particular needs (due to physical size, plus eye spacing, plus prescription) you're shit out of luck when you need a new prescription but the current fashion trend is only for larger or oversized plastic frames which just can not and do not work for me. What to me is a required disability aid has been usurped into a fashion trend which basically means I can't update my out of date prescription as they don't make the frame sizes/type I need now. Yay! But totally not a disability right?
@@quartzairmet9885 yes same ! I will say "because I'm chronically ill" when talking about for example who fatigue changes my ability to do stuff, and "because I'm disabled" when talking about complicated access to transport for example.
@@AlexaFaie I definitely get what you mean ! That's why you can't just say a diagnosis is always or is never a disability or a chronic illness. For me being short sighted is really not a disability, but because it's not very severe and I have easy access to glasses and contacts. So it's just a matter of having the medical aid I need. But I can totally imagine that in more severe forms and/or when medical care is to expensive or inaccessible it can be very disabling.
At least in Germany your chronic illness can be counted as a disability. A chronic illness is a medical condition that has been going on for 6 months or more. There is also a sort of list of disabilities with percentages that the government uses to determine your "grade of disability". Based on that you get different benefits etc. (the system is not that great though but that could be a whole video topic) basically, I'm chronically ill and my illnesses (and surrounding tbh) are disabling me from living the same way someone my age would normally live = I have a disability. :)
I struggle to know what language to use for myself. I have fibromyalgia as well as generalized anxiety disorder and major depressive disorder. I have a hard time working because of my flare ups. My rheumatologist has used the words “disability” and “chronically ill”. But I feel like I am not “ill enough” for those labels, like it takes away from other more seriously ill people.
This makes me sad. We do too much comparing and competing and not enough including and supporting. I have a horrific chronic pain condition. Anything that recognizes that some people need to be accommodated a little differently to live a normal-ish life through no choice of their own, in my opinion, makes my life easier. It makes society more aware that someone like me might need accommodating if they have encountered someone like you before. It makes people more open to accommodating either of us if they have encountered someone with an extremely visible physical difference just living a normal-ish life, and the reverse. None of us are lesser than and we need to get rid of that thinking and recognize our similarities instead. Make being disabled in lots of ways normal, and we all have it a little easier navigating the world. So if you want permission or support to call yourself disabled, I am behind it 💯. We come in all flavors and people can just get used to it! One of us! 🤣
I hear you on the feeling of taking away from "really" disabled people. But I haven't been able to cook a meal or drive on the road for three years, so yes, while my problems are all neurological and the rest of my body is fine, this is in fact disability.
I know what you mean, I’ve got the same things as you (plus a few more) and have only started referring to myself as disabled in the last year or so. I received my fibromyalgia diagnosis nearly twenty years ago but only started really feeling truly disabled the last few years. I’ve embraced the term disabled because I was so frustrated with people offering “get well soon” wishes if I mentioned my chronic illnesses
Just because other people are also disabled or "more" disabled doesn't mean you aren't also going through a chronic illness or disability and that it is valid. They can be going through a valid struggle and that doesn't negate yours. I have fibro, arthritis, PTSD, Bipolar 2 and and TBI I use a cane to walk most days. It hurts to bend over or get out of bed, or basically do anything lol. I've been limited in what I can do in life. I call myself disabled and beautiful. And your struggles and life experiences are just as valid as mine or anyone else's.
I have spastic diplegia cerebral palsy and I recently found out I have major depressive disorder based on depression as a kid when I didn't know what it was.
My 5 year old daughter has cerebral palsy, and relies entirely on a feeding tube, so she's disabled, but she is very healthy. My 3 year old daughter looks and acts physically typical, but has other complications that cause her to have chronic lung disease and asthma and she aspirates; she's managing chronic illness. She's probably at a higher risk of complications if she contracts Covid. But it flips most people's expectations of thinking which child is more at risk and needs more protections in our current climate, the child without visible concerns has to be more careful. Thank you, Jessica, for the work you do to create these videos.
Hey Jessica! I just want you to know that you are the most inspiring TH-camr out there right now! :) Every video you post makes everyone's (mine included) day a little brighter! Thank you so much!! I´m not disabled, but through your videos, I have certainly become more educated about disability and chronic illnesses. ❤
this might be slightly unrelated, but i read about that tv show she was on- britain's missing top model- and it seems like it was really horrible and abusive to the women in it. they bullied jessica for not having obviously visible disabilities, one mentor refused to speak to two women in sign language, they eliminated one woman for not speaking- when she was deaf and greatly preferred to speak in sign language,, and there are so many more examples. there's something in here about how they failed to actually include all types of disabilities even though that was their goal- but i'm not quite sure how to phrase it.
I watched it, having just been diagnosed myself with a bunch of invisible disabilities, and it was AWFUL. The contestants that had visible physical disabilities (eg. missing an arm, using a wheelchair) clubbed together and basically asserted that the others were faking, less disabled, didn't deserve to be there, were incapable. They expected adjustments for their disabilities, while mocking or dismissing adjustments for Jessica and the Deaf models.
@@castorj.b.1257 I started watching "Deaf U", which is a sort of a probably mildly scripted reality Netflix show about a university for deaf students. It really struck me that the students with Cochlear implants and hearing aids or those that didn't sign 100% of the time were shunned, like they weren't properly deaf.
@@lauren8627 My understanding is that, especially in the US, there's a very distinct Deaf culture, which obviously includes things like signed language (ASL in the US, BSL here for example), universities for the Deaf (like Gallaudet) etc. I think it's more common for there to be entirely Deaf schools which naturally grows a Deaf community in a particular area. Theres a lot of pride in Deafness, and I think maybe some Deaf people see people who get cochlear implants as 'selling out' or ceding the fight for disability rights in the name of an 'easy life' (which obviously it's not, but still). It's a tough debate, and since I'm not Deaf I'm not remotely capable of saying who's right and wrong. But it seems to stem from the fact that the Deaf community has a collective culture and language in a way that perhaps other disabilities don't since we mix more freely with the 'able-bodied/neurotypical' world since we share a language.
@@ambertapping7919 it's also worth noting that for centuries, hearing/abled people sought to stamp out sign language and force Deaf people to lip read and just finger-spell (this is called Oralism). There were such abusive practices at schools for the Deaf to literally beat/starve the sign out of the students. Sign language survived covertly, in secret, through pure will power and a collective fight. That history feeds into a strong pride and sense of ownership of sign language, and also a distrust of hearing people or those who seem nearer to Oralism. Of course it doesn't make prejudice towards *anyone* ok, like.. at all... but you can see where it stems from, and things that stem from fear and survival are hard to overturn.
You're a gay icon! I identify as chronically ill and disabled. My chronic illness is mostly separate from my disabilities, although it caused one of my two disabilities. For me, they are definitely two different aspects of my life. I've also been both for as long as I can remember, from about the age of six which is because of my illness, so I never really had grapple with accepting either of those things. I think using both helps other people understand that there are multiple things happening in this body. Although I do get people pitying me for having so many issues and they really don't need to because they are just things and I literally can't remember what it's like to not have them.
My mum took two years to die of cancer. I think we managed to get her disability benefits for the last three months of that and never managed to get me any carer's allowance. The government really doesn't help at all
@@jillyfish72 Hahahahaha. What like with doing tiers and saying in tier two you can't go out anywhere in groups (like to pubs) but pubs don't have to close, then tier 3 the pubs have to close. And they're going to be "generous" and give everyone whose job is affected because they HAVE to close some money. But you're shit out of luck if you work in a pub in a tier 2 area because they weren't specifically told to close? Generous like that? This whole fiasco is well... a fiasco isn't it?
That was the cutest and funniest promo advert I’ve ever seen. Love the bit about the fact you can claim you’ve known all along. 🤣 You’ve really helped me not feel so gloomy (and ashamed) about what I have to deal with, on a daily basis. Thank you, for being you 🥰
Thank you Jessica ❤️I didn't identify as disabled until I was in my 20s because I wasn't 'disabled enough' (despite having obvious scoliosis and low muscle tone). I recently found a great neurologist that is getting me genetic testing to learn more about my disease. Having to grieve my mobility is really hitting hard esp after a horrible PT experience yesterday. Your videos help me a lot! 🌈
I've been depressed for the past 10 years, and it's probably never going away. It's something I've learned to deal with and live with, so that I can still kind of function in daily life, but every. single. thing. is still very hard to do. Physically nothing is wrong with me so I feel like I don't deserve the term 'disabled'. Even though my depression does really seriously affect my ability to function normally. How do I get over this mindset? With other people who have something that hinders their functioning but is invisible I would never tell them they're not disabled. Why do I do this to myself?
Chronic depression and anxiety here as well, so I understand the hesitancy. But there is something physically ‘wrong’! I know we like to take about depression just “being in your head,” but depression and other mental illnesses are linked to the brain not producing the right level and combination of chemicals. My body doesn’t naturally make enough serotonin, so I have to take medication to get it to work right. It helped me to start framing it that way- just like a diabetic needs to take insulin, I need to take medication so my brain works correctly.
One part is all those pseudo motivational cow excrements that downplay what depression is. But it's also that it become a part of us, somehow. We have to get used to it, so it's hard to imagine how it is to live without it. I am only recently starting to feel well with myself (well, I was before... 2020 as a whole). And that's only then I realized how much I had internalized.
I've been looking for this comment! I'm in the exact same boat as you and I've been hesitant about using "disabled" or "chronically ill" because I didn't think I deserved it or was ill enough.
@@sarahk8053 Exactly! But that's the thing with things like depression I think. My depression always likes to tell me I'm not sick enough to deserve help and I'm taking help away from peole who really need it and who have it worse than me. But I feel like that's just the nature of this mental illness.
Very important thing Ive learned over ten years of living with lupus: Your first priority is survival. Wellness. Not what other people think, what you deserve, or how much you've paid into the system. Do whatever it takes to be ok. Drop kick anyone or anything that negatively impacts your health.
Oh Jessica this video came at the perfect time. Ive been feeling just a bit shitty about my chronic ilness today.m especially since tommorow is my birthday and its most likely ill be sick in bed.. your videos always cheer me up. Now i get to enjoy your jokes and funny sense of humor. Anyway back to the point. Thank you for this upload it will cheer me up. 😍❤
As a disabled/chronically pained person and as someone who has spent eighteen (and counting!) birthdays in pain, I can relate! Happy birthday!!! You are not alone.
I'm doing my PhD in creative writing and disability studies. I have (very mild) Cerebral Palsy, and I consider myself just 'disabled' but the chronic fatigue and pain could be chronic illness, I suppose. While researching, I came across the term Hedonic Adaptation; this is the idea that people have a 'baseline' happiness they return to after a big life change, positive or negative. This can be negative for, say, newlyweds becoming bored, but for us (if we have become disabled later on, or if we get worse) we are able to return to that baseline and adapt. This is good for us because we are able to live with our new normal.
I tend to use both “chronically ill” and “disabled” interchangeably to classify my type 1 diabetes and other non-diagnosed issues including chronic headaches and intense period pain. However, I sometimes feel a bit weird using “disabled” since society has conditioned me into thinking that only wheelchairs, blindness, and Deafness count. All in all, language is weird, and disability is a lot more complex than able bodied people think and say it is.
I use chronic Illness or chronic pain more than disabled because (in the us at least) being disabled and disability rights are generally imagined as being specific to wheelchair users needs for navigating with their wheelchair.I find that discussing it as a chronic illness gets me the help I actually need, as someone whose needs for access aren't wheelchair related.
I'm in shock right now. I ordered some supplements for my husband to help him with some concerns I know he has with his skin and joints... then I went to make my own and put that I was mostly concerned with brain health, stress, and oh yeah, might want to have my body prepped for kids for the next few years ahead. They asked me to pick top priory goal/concern and I choose brain health. I finished the questionnaire and only have two supplements suggested for my pack... neither for brain health, both for prenatal support (and one also for bone health because of where I live).... I have no words.
I agree with jessica completely on this one. it is like a lot of spectrums of rainbows all crossing each other. And yes, they only care about whether we can make babies or not. I am nowhere near getting a diagnosis for my mental or physical issues (well, i am not even trying anymore to get a diagnosis) but when i was sitting in front of a doctor talking to him about my scoliosis and whether it could be related to other issues I had and how much in constant and extreme amount of pain i was, my mother was sitting beside me and only asked him one question "would it cause any future problems for her being a woman?" * meaningful stare until the doctor realized what she meant and told her to not worry* . yes, she ignored my pain ( well, actually she had ignored it all my life and actually likes to call me a attention seeking liar) but all she was worried about if i could reproduce like a good little woman that I was. Fuck that shit! i don't even want to have kids.
My jaw just about hit the floor when I read what your mom asked the doctor. I'm so sorry to hear you experienced that... My mother undercut my pain relating to my disability as well, I grew tired trying to appease her when she has such a lack of true empathy. I'm decidedly not talking to her for now, to protect my own peace. I also don't want kids, probably in connection with my trauma from her but also because I don't want to have kids because I feel like I'm expected to.
I've got just two more years left before they consider me enough of an adult to be allowed to get my tubes tied if I want. Like they literally wouldn't even discuss what it might entail with me prior to turning 35. LIKE WHAT? I knew when I was a very very small child that I didn't want to have a baby of my own, I'm severely tocophobic, and I don't even want to adopt because I just can't with children (couldn't even when I was one). But its been a life full of being told "oh you'll change your mind when you grow up". My Mum said last year that she's finally "accepted" that she's never going to have grandkids. But like my brother could father children still. They'd still be her grandkids. Her lack of support on that is why I never told her about getting an abortion (long story as to why I couldn't get morning after pill, won't go into it here as its triggering both for myself and probably others). My Mum was very fond of the whole "oh but you're too young to be in pain" or just saying that "if you think that's bad wait until you're my age thing". But then she'll also downplay her own pain. It will be blatantly clear on her face that she's in pain, but she'll refuse any pain meds to help, say she's fine and just tries to ignore it. I mean it took us years to get her to stop eating things containing coriander because she "couldn't be sure it was that" which was causing her to experience rapid expulsion of bodily fluids from both ends and she didn't even like the taste of it. Guess what? She's allergic to it. And I have the same mild issues she had to begin with so stopped eating anything with it in before it became a more serious issue (plus it tastes gross) and she felt that it wasn't something I should be making a decision on so lightly. Like what? You want me to get as bad as you before treating it with the very very easy method of not eating it? When I don't even like it? ???? What are people?
@@kasmargueritecolwell7654 I also question a lot why i don't want kids.i never wanted any or to get married and it was never an obvious thing to me like to many other people that you grow up and get married and have babies. and in the beginning i thought it was because of the dysfunctional emotionally abusive family that i had or the pressure put on me as a woman or maybe because i don't like kids... but in the end i decided on that some people just don't want kids, they don't have that instinct to mother a child... but i still go back and forth on why i don't want them. I still sometime question if i didn't have the life i have lived until now and if i was free and able to be with the other half of my soul... would i want to live a "traditional" family life (married with kids in a nice quiet neighborhood where we could have evening tea in the garden)... but i can't quite imagine myself in that scenario ever...
@@AlexaFaie ikr... what is up with them thinking we owe them a grandchild? My mother likes to compare my pain and her pain all the time and always make a point of "you are so young you can't be feeling that much pain". it's really funny to me how my back pain is a joke and a drama for attention but her back pain (or any other pain she might feel) is an emergency where i have to sit and listen to how bad i hurts and give suggestions to manage it or to go to the doctor with her.
Right there with you. I have endometriosis, which is recognized as a chronic illness in very few countries. Only recently did the medical authorities in my country (France) start to talk about it and it’s mainly because they’re realizing it affects women’s fertility. You know, because debilitating pain is not worth trying to find a cure for -_-
Oh crap, you had a spinal headache for a couple of years??? OUCH! I tell people that everyone is a little bit crazy, it's just some of us are more certified than others.... lol. I have severe OCD and PTSD. I am currently disabled because... well employers frown upon spraying customers with disinfectant and hiding under your desk. I joke because... if you can't laugh at it, you really will go full on crazy. BUT gotta tell you, these days with a pandemic raging all around, I don't look nearly so crazy now.
Yay OCD...What fun...definitely did NOT trigger digestive problems like real quick into the pandemic for me caused by crippling anxiety and OCD. Nope. I’m fine. 😐
@@dont_harsh_my_mellow The anxiety is REAL. Sometimes just how devastating it can be is often glossed over by the focus of society to focus on the behaviors the anxiety cause. Kudos to you for making it through the day, and every day.
@@patriciakellyadams134 Thank you! We have to have patience with our bodies and minds and learn to work with them and be kind to ourselves when we don't get things done how we wanted.
Just here to watch your absolutely gorgeous hair for 24min straight (or gay?). I don't mean that your message isn't important, it's just that you're so pretty (and my high femme role model haha). Have a good day!
Omg I am here so early! I have Ehlers-Danlos and mental health things, and I use ably-disabled. I explain it as I have a chronic illness that causes disruptions in my abilities, therefore making me disabled with varying degrees of ability depending on activity/day and such.
I got diagnosed with MS in September 2019 and because of covid/brain inflammation they gave me no explanations whatsoever, you lady just blew my mind, and it feels weird to say thinking about the conditions of my brain
I'm not disabled physically but I have an Personality disorder that is pretty much interfere with my life. And also something I feel like I just have to learn living with and find ways to get to a point it's not as energy draining. But since I feel it's something I'll permanently live with it feels weird to call it an illness cause I feel illness imply that you'll completely recover one day.
I feel like we generally lack the vocabulary or the clarity of "can we use chronically ill or disabled" with mental illness. I have chronic clinical depression and I always feel like I'm not allowed to use "disabled" or similar terms.
As a "disabled person " who lives with chronic pain as well , I always said that I never felt disabled from being in my wheel chair , but rather from the pain . That is what keeps me confined most days . If I felt good , I'd be out burning around in my chair all the time , but the terrible pain that I have to live with often puts me right in to bed . So I agree the term disabled can have many meanings . Thanks for always enlightening the planet Jessica . Greetings from Canada
Ah I'm still watching the start of this video and it is hitting a bit too close to home hahaha- accepting the label disability can be a little daunting, especially when you're struggling to truly understand it to yourself
I got my first diagnosis today, I've been struggling my whole life and this should open the door for many more of my issues to make sense. Im very excited and happy 😊 thank you Jessica for giving me hope and entertaining me and inspiring me while I've waited a lot of yrs to get the help and answers im needing. I still have a long way to go but im finally making progress and thats exciting.
I've been chronically ill for over a decade and it was only this last year that I called myself disabled. People in the us at least have disability pegged as people that get disability benefits and cant work. I was constantly thinking "I'm working so I can't be disabled" plus I was in remission for a year and a half which made me feel like I was pretending to be chronically ill/disabled because I was able to stop for a little while.
We definitely do tend toward the "legal" definition of disabled, as well as assuming that without qualifiers that means totally (can't work at all) and permanently (no indication the status will change). But even within the legal definition, there is both partial disability and temporary disability--it just relates almost entirely to your ability to WORK because our culture is so massively work-centric. But if you do run into people who think this way, as most inexperienced people will here, it could be helpful to use "partial disability" if it relates to something like workplace accommodations. It gets people thinking without needing to completely instantly reverse their world view on ableism or our cultural work productivity (personal value as human capital meritocracy problem) views to understand you in that moment.
@@crosita1 that's funny because I actually called myself "part-time disabled" before I took the plunge and realized there's no shame in being disabled. I think the stigma around it is what keeps people from identifying with it. The stigma of being lazy and wanting handouts, or the American obsession with disability is a widely abused system (when its not). I know that was hard for me since my mom is part of the 1% who did abuse the system, so its hard to seperate myself from my upbringing with that identity.
I use the terms disabled, neurodivergent, and sick a lot. I mostly call myself a disabled woman but when talking to my kids and such, I explain I am sick and it won't really go away.
This is amazingly similar to my story. I was disabled as a child, fixed at 15, severely re-disabled at 46 and it took a year to figure out how to “fix“ for disability (now I am permanently disabled). Now six years later my genetic disorders are coming too light. Thank you so much for sharing this Miss Jessica. You are not alone and not completely uncommon. 🙌🏼🙌🏼👍🏼👍🏼❤️
This is a great discussion, and I love how you articulated your thoughts! I am chronically ill and my chronic illnesses are disabling, so I also consider myself disabled. Kind of the mirror image of you, Jessica. It took me a long time to get to that point, though, because I was undiagnosed and sort of expected everything would clear up once I got a diagnosis. That wasn’t the case, and finally accepting the label “disabled” for myself was such a positive for both my self-understanding and for my ability to ask for access and assistance. I also often see differences between people born with their disability and people, like me, who acquired it later. Even in some of the groups I’ve been a part of, I’ve seen a difference in thought in people who acquired their disability as a child/teenager versus as an established adult. Having fatigue or pain seem like big players in how people view their conditions, as well. I hope we can honor and learn from all our experiences and foster an inclusive community. I think our diversity may be our power.
thank you for uploading... i’m having a bed day and your videos always help me feel better. i hope you are doing better/continue to do better. love you!!
Jessica! First of all, ypur hair is gorgeous!! Second, that Care/Of business sounds soo helpful! I'm so glad it exists:) Third, I didn't really undersatnd what do you mean who you say someone is "ill"? Because having a "classic" (barf) disabilty like being paralized can be sort of like an illness of the body, no? If something is not right with some parts of your body, can't it be considered an illness every time?
I understand that having both your diagnoses is a terrible mix, but please, when you say that "just" having EDS on it's own is perfectly managable it felt pretty bad for me. I'd say it's a terrible condition to have even just on it's own (at least in my case, I know it varies greatly from person to person). Please don't say it like that.
I get what you’re saying, but for Jessica of course just EDS would be perfectly manageable, she’s managing 2 diagnoses so from her perspective it would be a lot easier to have just one, it doesn’t make what she’s saying universal, and I agree she should have added that either on their own is still awful, but she’s perfectly valid in what she said.
@@Lexi-zx3qn Except she doesn't actually know that. She herself stated it's hard to know for sure which symptoms come from which disorder because there's so much overlap. So if the HNPP were to completely disappear there's no way for her to know if half of her problems would go away, thus making the EDS feel so manageable, or if only a very few specific symptoms would disappear and otherwise leave her in mostly the same state, making management no different with the mess of EDS and all its comorbidities. It's really just a wishful statement of fantasy that doesn't actually have meaning, like when I say I wish I had cancer instead of all my issues because then a) people would acknowledge my illness and b) I would have viable treatment options. But I say that out of frustration for my reality, it's not a statement that actually his any merit. I could be just a bad off and have a form of cancer that's not responding to treatments and have people who are uncomfortable being around me. Her fantasy statement is no different than mine. She wouldn't *actually* be better with one diagnosis, she just assumes so out of pure wish. And you agreeing it's pure conjecture.
EDS is a highly variable condition, for some people it is pretty manageable, for others it really is much harder to manage. She was referring to her own condition, not making a statement about EDS generally
0:10 Aside from my native Dutch, I use English, German, and Esperanto. 1:12 You just gave me an idea. I think I'll make a manual for me on my website. 7:36 I seem to remember hearing Dr. Mike say that supplements are (usually) not necessary. 8:48 You did, huh? ;-)
As a disabled person that studies inequality and culture, I have a paradoxical view on the term 'disability': On the one hand, the word makes it seem like 'disabled' people have less ability than 'abled' people, although they might be better at many things that society simply considers to be unimportant. This is why *differently abled* or *diverse ability* may possibly be a good alternative terms when seeking accommodations. On the other hand, I have noticed many 'disabled' people disassociating from the word because they don't want to be associated with other types of 'disabled' people, as though they are above them. For example, I read somewhere that I (a hearing person) should not treat deaf people like disabled people by talking down to them. I reject this type of dissociation from disability - it implies that disabled people should be treated as less than, or that there is some sort of hierarchy. I would never talk down to any person on the basis of ability. There is a difference between rejecting a label and placing yourself above others. Just my 2 cents. P.S. this is a very short commentary on very complex issues, if anyone would like clarification on any of my points please feel free to ask without fear of angry arguments.
I have A BIG problem mainly with terms such as differently abled as they sound a lot like euphemisms that mask the seriousness of disability and play it down a lot. Most disabled people very much will want to opt out of being called differently abled in fear of it implying that their conditions aren’t all that bad and it also puts the burden on them to also then have different abilities when many aren’t exceptional at anything in particular or have something else to make up for their disability.
@@dont_harsh_my_mellow I absolutely agree with you, that is a very good point. This shows why I was hesitant to label my thoughts as definitive - the subject of disability is very complex, and one major issue is the absolute need of many individuals to have certain accommodations. I myself am struggling because doctors haven't been able to label some of my chronic conditions, which makes it impossible to get all the accommodations I need. Using the label 'differently-abled' would certainly not help with that. Thank you for bringing that up!
Hello! I'm legally blind and I've found taking the social model of disability into consideration versus the medical model of disability to be able to tackle the "issues" the "differently abled" label is trying to do. Lots of disabled people HATE differently abled, for a plethora of reasons I won't go into, but in essence the social model of disability states that those who are disabled are disabled by lack of accessibility and the typical bodied focused society, not solely by a medical condition or diagnosis. Though if you're studying disability I imagine this has come up before, just my 2 cents.
@@mamber4100 very good points. When I delve into this topic in my studies these sorts of nuances come up frequently, although my focus is not just on disability. The lens one uses to examine disability and the context in which the term is invoked seems to matter greatly when it comes to which terms are considered most appropriate.
I‘m currently in the process of accepting my chronic illness/disability. It‘s far from easy, especially since I have no idea what that illness/disability even is. But using the words disabled and chronically ill is so, so incredibly freeing to me. For years I have tried to run after a cure and desperately tried to figure out what’s wrong with me, but now I have an umbrella term that I can use to describe myself. And I can finally let go of scrambling to get to the (possibly imaginary) light of being healthy, and instead focusing of making myself comfortable within the darkness. I‘ll still try to find out what my problem is, but I‘ll know that my life doesn’t just begin after I‘ve found all the answers, it begins now. I have been binging this channel for the past week, and it’s so, so helpful. Thank you!
Language is indeed complicated 😅 thank you Jessica for putting some descriptive words to the topic and clearing some of my confusion. Since I moved to England I started to always answer I’m alright to the question ‘how are you’. Yeah, I feel stupid every time I go to the doctor trying to explain my vague but significant symptoms... no wonder they don’t take me seriously... one and a half years of nearly constant migraines, joint and muscle pain, brain fog, memory problems.... yeah, I’m fine just can’t get a job or social welfare nor move back to my country because of COVID. Excuse me while I mentally run up a mountain to scream my frustration. At least the doc mentioned that I have chronic pain, but when I asked what we’re going to do about it... she shrugged it off and ended the appointment. Joy.
i’m working on getting officially classified as disabled (and on SSI) as my cfs/me gets worse and makes it nearly impossible to hold a job. it’s really been a struggle bc apparently most people w cfs aren’t severe enough where it’s automatically classified as a disability? mine is definitely leaving me unable to function normally though edit: i was holding a job for a while but lost it bc i kept having cfs crashes so 🙃
Would love for you to speak more in depth about medication and their stigma. I take a lot of painkillers (both prescribed ones and regular paracetamol) and am constantly being told I'm too young for it and am addicted to them and should just put up with pain. And so many people I know refuse antidepressants due to fear or stigma. I'm often being told I should just change my diet, take vitamins, do yoga etc instead of rely on medication. Would love to hear your thoughts on this
I relate to this so strongly. My doctor told me to do pilates/yoga to help my back pain but I've recently realised no matter how much of that I do, I'll still need to take painkillers regularly. And when I started having stomach problems the people around me immediately assumed the painkillers were the cause... Nope, I just have a separate stomach issue. No-one should be judged for taking the medication they need.
I’m not on pain killers, but I get the diet and vitamin thing all the time. Like that’s not going to help the fact that part of my body doesn’t produce the hormone it’s supposed to or the fact that my brain doesn’t effectively produce certain neurotransmitters. I do feel like yoga did help with my muscle issues, but it definitely isn’t a pain cure all.
I agree with your analysis on the difference between a condition from birth vs. something that they could do and now can't. My 2 younger sisters both have an allergy to milk (among other things, but this is the most simple example to explain). The older of the two, J, has been aware of the allergy since she was a few months old. She has grown up never having milk in any form (aside from the occasional accident, or when there isn't enough of the specific protein she is allergic to to cause any harm). The younger one, E, has only known about her allergy for the last 4 or 5 years as her allergy reacted internally and was harder to find. When she first had to change her diet she rebelled horribly and would sneak food and was unfortunately making her other chronic conditions worse as a result. It is definitely a mindset of "I have always lived this way" in contrast to "I used to be able to do this and now I can't".
i have schizophrenia and autism and I consider myself mentally and physically disabled because of my physical symptoms (I have chronic fatigue, chronic pain and catatonia)
Jessica is such a ray of sunshine and joy 🌈 I've found that using disabled and chronically ill just depends on who I'm talking to, what we're doing or considering doing, and frequently just how I'm functioning that day.
Careof sounds like it would be very useful for me but I don't like the quiz aspect.... My doctors tell me what supplements would be good for me based on medical history and blood tests, and I don't really want to get a random little packet of vitamins I might not actually need. Is there a way to pick your own? The packaging sounds great.
I have to agree with you! I absolutely love and support Jessica but I'm a little concerned by this sponsor. Supplements can be essential when you are deficient in something, but only testing by a medical professional can tell you what you need. The danger of this quiz is that in the worst case it will cause people take supplements to 'treat' symptoms that may actually require a different medical treatment, and in the best case they will end up with very expensive pee!
@@aliced-j9576 Yes! A few youtubers I follow have been sponsored by them lately (mostly channels about disability or sustainability) and I just do not trust any company selling me supplements to know what I actually need.
As Mia already said above, you can pick your own, according to advice from a professional if you wish, which is great. To add to that though, I agree that going to a doctor to find out if and what you should take is absolutely the ideal case, but there can be lots of barriers to accessing that kind of care. In those cases I'd say doing a quiz of this kind is better than what many would otherwise do, just taking something fairly randomly in the hope it would be good for them. You're going to be more likely to get something that suits your needs and deficiencies this way, and it's a lot quicker and more accessible as a quiz than individually gathering all that information.
It's interesting that asthma is included on the list of chronic illnesses that everyone agrees on. I've had asthma my whole life, but I've never considered myself chronically ill. I think asthma is a spectrum condition: some people are barely affected and rarely need inhalers; some people have more severe, but well-managed asthma and take a regular preventer inhaler; others struggle to do basic tasks because of their asthma. For me, the latter category fits into the chronic illness box, but the others don't. Personally, I see my asthma as just a bit inconvenient - I have to take my inhalers twice a day, but am otherwise relatively unaffected by it in general.
My body is basically a clusterfuck is how I describe it. Between disabilities and chronic illness that's how I describe it. Yes the behaviour of my choice to if I have a child has often been put over the pain I am in. If I want to yeet my uterus for the sake of pain I should be allowed to but nhs says no because children. My gender and sexuality are clusterfucks too. I've been disabled since birth with other things just keep appearing up and I've just rolled with them. Helps I've never been fully healthy and that's helped me understand everything. Definitely think my manual would be a decent book size.
I really appreciated what Jessica said at the end. I felt really comfortable using chronically ill for 7 years but a recent positive change in my health and an Instagram post sent me into an identity crisis and questioning of the last 7 years and how I fit into the community and if I was allowed in and I've just felt really really bad since. So this means a lot to me, thank you.
I've been living with fibromyalgia and cfs for about 4 yrs which has limited my mobility. I didn't consider calling myself disabled because my illness is not "visible". I also realize that I should use a walking cane but I afraid that doing so would mean that my life has changed forever.
Fellow cfs person here-had some similar feelings about aids/asking for accommodations, but I eventually came to the conclusion that, if I tried it and it would help, things already had changed. Like, the only difference was me noticing.
My dear lady, if I were not almost 3 times older and of the "other gender" as well as already married I would likely become another of the people pestering you for your attention and trying to find a place to live near by. You are a joy to watch and I love how your mind works. Thank you for these videos, they really brighten my days.
This is possibly the most beautiful speech I've heard in a long time. This quote deserves to be framed 💕. "And, my darling, whatever you wish to call yourself, you go right ahead. Because words are actually just nonsense sounds that we've strung together in order to attempt communication and none of it is perfect and it's a complete hodge-podge. Whatever makes you happy, whatever you want to think of yourself as, whatever words make you feel relieved to have them applied to you, I want you to go right ahead and OWN IT. Yes, words are helpful in finding your community. Yes, it's delightful to know others with the same label attached to them. But when it comes down to it, when it really matters, we're all just mushy little creatures, bobbing along, trying to make connections with others and be loved for who we are. So you do you. You do absolutely fabulous you." - Jessica Kellgren-Fozard
This video made me nearly as emotional as the one you made about being "disabled enough". After watching it I claimed my title of being disabled and vowed to get a diagnosis no matter what it took! I'm happy to report that I have a doctor now that found the neck injury others had missed for 20 years!!! Thank you so much for raising awareness, because of you I'm finally getting the help I need ❤️
EDS is considerate as a chronic illness in france and as a disability in some regions but not all. I use both labels, to me disabled is an umbrella and chronic illness an other and they both intersect.
As a type 1 diabetes, formerly scoliosis, and thyroid cancer, and a fellow redhead who loves fashion, I’m so happy I stumbled upon your good energy! I feel so heard! Sending love 💘
I’ve never said, “I’m disabled.” If I need to explain my income or my living situation, I will disclose that “I’m on Disability.” Because it feels like something I have, not who I am.
I appreciate you a lot because some individuals with chronic illness are dismissed and told "you're not disabled, you're not ill, you could be so much worse" blah blah. I got hit by a car when I was 16 and that's when everything started rolling in motion. I kind of never got better. Hypermobile Ehlers-Danlos Syndryome is so commonly misused. I was told that I am "loosy-goosy" but I had inflammation, memory impairment, chronic hunger pain, intense stomach pain, nerve pain EVERYWHERE. COUGHING hurts. I'm tired of being unheard, you make me feel heard. Thank you Jess.
I strongly believe I have EDS but I had this relisation in feb and was about to go to my doctor (who admits my body is 'weird') and my disabled mother who I care for also fits the symptons but of course covid! so planing on writng a letter (essay) to actual doctor who is also my mothers doctor for his eyes coz at the moment the remote surgery can't garantee who you speak to. Great timing. Unitl I can get this seen to I have to point to single symptons (bad knee, hip, back appalling IBS, constant back ground pain etc) so just a moaning poorly middle aged women. Labels legitimise you
Thank you so much, this video along with "You're not useless" and "I was misdiagnosed" helped me a lot in accepting myself. I only have a chronically low B12 and most doctors say it's high enough, I had to go to private healthcare too to get acknowledged that "enough B12 to survive" isn't enough to thrive. The low B12 isn't enough to be chronically ill, not enough to be disabled but I can't do the same things other people my age do. Thank you for speaking about this grey area!
Another wonderful video! Your videos always cheer me up and it's great to be able to learn more about other sides of the chronically I'll and disabled communities where I don't fit.
Most of the time I say I'm a spoonie as it gets long and complicated otherwise. 😉 But if I have to get into the details, I'm cronically ill and disabled like you. I have more than ten different conditions (including ME), and most of them stem from my autoimmunity which was always there but went rogue in my early teens.
"If my body is this complicated, why didn't it come with a manual?!" Me, but with my brain with all of its issues *sighs* Also me with my ovaries, PCOS is weird as hell
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As an autistic person , I deeply resonate to "language is confusing"
As someone with like pretty annoying ADHD, I too, relate. Hello, relative disordered fella! ADHD and autism are all kinda similar so I consider us relative disorders lol.
Of all the things I struggle with daily, why is my autism the only one classed as a disability? I really don't think that being obsessed with staring into eyeballs while talking about inconsequential things is the One True Way to be going about things!
@@mouseluva well when I got my diagnosis, they said it was in the process of being changed from disorder to condition. But obviously it's not in common use yet.
as an autistic person with a degree in linguistics and who has studied like 10 languages, same
language is confusing
@@SkwithOv I was about to say and that's why I study linguistics
Jessica: “And being so ill I couldn’t think straight”
Me: She’s going to make a gay joke isn’t she...
Also me: "I certainly hope so..." 😂
i'd imagine race also impacts a person's ability to get treatment for their chronic illness. there's a long history of Black people receiving less diligent treatment than their white counterparts- i.e. a doctor might actually investigate a white person's symptoms while telling a Black patient with the same symptoms that it's not a big deal.
It’s been proven when a survey with doctors and nurses was done showed that they think black people feel less pain. 😐
it used to be a huge thing that racist white people thought black people either didn't feel pain at all or felt it a lot less than white people. unfortunately that's still going on today, even if it's a bit watered down.
edit: i'm sorry i don't think i worded this too well. i meant to say that today, it's not as bad as it was, but it's still really really astonishingly bad.
it definitely plays a role. while it wasn't specifically about disability, john oliver did a great segment about medical biases, specifically toward women and black people. he also had wanda sykes for part of it! i'd highly recommend it if you were interested in watching it.
On top of the "not feeling pain" thing, when the war on drugs started to take off in the US (I don't know if the same thing happened in other countries) doctors and nurses would assume that every black person was just trying to get their hands on more drugs rather than treating us for our actual symptoms. This still persists today.
@@locsoluv94 it definitely happens elsewhere, the United States has a lot of medical, social, and cultural influence on other countries through many sources, from academia to politics to popular media.
I've recently started saying "I'm intermittently disabled by overlapping chronic illnesses." I hesitated for a long time using "disabled" in any form, because it felt like an intrusion into a space I wasn't entitled to. Once I attached the word "intermittent" it all snapped into focus for me.
I will steal that phrasing for me! Mwahaha! I'm a thief!!!
I'm glad it resonated with you. 😁
@@somedragontoslay2579 omg this comment section is so wholesome I love it ❤
I very much resonate with this 💖 (the “that’s for people with bigger problems”) is a weird mental block that somehow doesn’t occur probably applies to me when going to the grocery store, eating non microwavable food, or leaving my house just isn’t going to happen some days due to chronic illness. Somehow “disabled” seems too far though as sometimes things work (ish)? Ugh words 🤦♀️
@@cuteCassandra96 most disabled people have good days where they function more than other days.
Disability is a spectrum that covers a wide range of issues and functionalities.
I have a chronic illness, and I'll say "I have a chronic illness" not, "I'm sick" or "I suffer from...". I really hate the word "suffer". I mean, I do suffer, some days, but I'm a lot more than that, too.
Ooh yes I get you! I have asthma and I never realised why “asthma sufferer” makes my skin crawl until my dad, who has RA, went on a huge rant about how he hates when people say, “aw he suffers from rheumatoid arthritis” and it opened my eyes so much! It’s something we/you deal with and have but it’s not something we SUffER from because life can still be good!
I know what you mean about the word"suffer". I've heard that journalists are told not to use use it, and instead say that a person has an illness instead of suffers from an illness.
For me it depends which issue I'm talking about. If it's more debilitating I'll use suffer, but most of the time I use has.
@@manifestationsofasort like there are days when you “suffer” but overall you don’t? Because yeah I get you there are definitely days when flares make you really suffer!
I like to term it, "I live with Bipolar Disorder and Chronic Fatigue". Sometimes I do suffer from them, and other times I just survive them.
"women's health issues are seen as most worthy of treatment when they affect their fertility"
my uterus, one of my normally-functioning organs: 🤪✌🏻
my depression, social anxiety, adhd, hypermobile eds, possible mitochondrial disease, digestive issues, and allergies with no discernible cause: 👁 👄 👁
"hey my periods are super irregular" -> "oh here's three options to choose from to regulate your cycle, also let's do an ultrasound to determine of you have pcos"
"hey nothing means anything anymore and i have no hope for the future" -> "cool cool, lmk when you're actively suicidal so we can hospitalize you for a week and teach you things about mental health you already know, also here's a misdiagnosis and meds for that"
@@j.saoirseplafker228 mee
as someone with a fatigue disorder, EDS, adhd, amd digestive issues - have you heard of MCAS? i got diagnosed with it due to the weird allergy part and treatment helps all the disorders (incl surprise gluten intolerance that nobody connected).MCAS travels with these other disorders
‘Hey I’m 17 and turns out I have a hormonal problem and PCOS. I feel like shit, look 90, and can’t do daily life.’
Doctor: ‘ah, but will it affect your fertility someday?’
Me: ´I’m 17. Calm down. I just want to be able to have a life and you’re only worried if I will be able to make a baby.’
I misheard chronically ill as "comically ill" which was...well, comical, if not downright tragic 😅🙀🙈💀
...no, not a comment on your pronunciation Jessica, just a comment on my own shortcoming in this case 😅🙀🙈
Mishearing what other people say is one of the most common ways I end up entertaining myself
@@karac.5807 That could have been an Oscar Wilde quote :'D
I am going to start calling myself comically ill, thanks for this!
@@butterscotch2730 sometimes in my head Oscar Wilde and Stephen Fry are the same person. Humour-wise I don't think I'm wrong 🤔🤔 though being American I'm sure I'm missing some of the finer nuances
🎭 dealing with anything in life....if I don't Laugh I Cry 😂🥴😭 💞🌍❤💙
Still laughing about "good looking potato." You have such a way with words. And yes, it's complicated, what to call what our bodies do. I'm legally blind in one eye which isn't a problem unless I'm parallel parking. I have migraines, too, but again, it's not apparent unless I'm in the throes of one, then you want to stand back. Really appreciate your educational and entertaining videos. Oh, and I haven't thought straight for a very long time. :)
I have gone blind in my right eye 2 years ago, but I still don't find the courage to drive....do you really find it ok to drive?
@@anhaicapitomaking8102 I was born this way so it's different for me. Mostly it affects my depth perception so I have to wait longer than 2-eyed people to pull into traffic. I've been driving for almost 50 years and I've been fine.
@@JamieAndersonMusic good to know, I will get back to it one of these days. Also, I live in Italy and people drive very bad. Anyway, thanks for sharing your experience
You're welcome. Best of luck to you
To paraphrase Captain Holt (brookyln 99): When someone steps up and says who they are, the world becomes a better place.
Context: one of the main characters comes out to her parents who have a hard time accepting the news but I feel like it applies to this video
*Part of the chronic illness gang - also, I found out I'm eligible for dsa on my student finance for my phd ☺️
❤❤❤❤
Rosa rocks.
I love that quote!
"Historically, peanuts have been used as one of the ingredients in dynamite."
Cool, so one thing that would kill me has been used as one of the ingredients in another thing that would kill me. How fitting.
You're just so powerful the universe needed to make sure it had a contingency plan
I speak of myself as "brain injured," because I would have been pretty completely NT if not for severe, relentless childhood abuse and torture. Complex PTSD (what I was left with) is more of a brain injury to me than a mental illness. Sometimes it functions as an invisible disability, but one that I can to a certain extent recover from. You're right, Jessica. It's complicated.
@@ianpitzerds and @Veevee306 both, as someone who also has C-PTSD (not autism related but still from prolonged childhood abuse) I can truly say that I completely agree with that explanation of how you feel about it being a brain injury.
Also as the parent of an autistic child I am absolutely horrified by the way that people have treated their autistic children, and those “treatments” that are straight up torture. And although am grateful for the explanations of people who have experienced it first hand, and have put it out there as a way to hopefully spare others potential harm, I still absolutely hate that it ever happened to any of you.
Anyways I’m not exactly sure what my whole comment was supposed to convey besides the fact that it really really breaks my heart that you have gone through that.
I dont know if I have CPTSD, but I do think that I do, because I was repeatedly sexually abused for like 2 years and i didnt tell anyone for 8 years after... and I have most of the symptoms, but whatever it is that effects me it suCKS so much. Like... I was listening to music once, than I dissociated so much that i almost went unconscious? Idk.
I have CPTSD and then physical illnesses that may or may not be a reaction that my body had to the abuse/trauma because we don't know for sure if developing chronic pain/illness years after abuse is actually because of it, so the question i ask myself every day is:
Is it a flare or depression? Or anxiety? Or the nightmare? Or something I ate? Or that I went for a walk? Or something I didn't eat? Or or or???
One of my trauma related disorders is technically mental, but it manifests as seizures and sometimes blindness. It very much straddles categories of disability and illness.
I also have CPTSD and for a long time didn't give myself much grace for how much it affected me, like I would beat myself up about getting bad grades and other people would have to remind me that actually I'm doing well which is extra impressive considering I'm dealing with a lot. Anyway then I went to a mental health first aid course and we did this activity where we compared how disabling different physical and mental illnesses were (not to be like who wins, but to be like hey take mental illness seriously plz) and they said having severe PTSD is as disabling as being paraplegic. Having PTSD effects someones life/health as much as being paraplegic would, and that just shocked me to my core because like I wouldn't be rude to someone who is paraplegic for having difficulty with stairs or other physically inaccessible things, but I would get mad at myself for struggling to do things that involved my triggers. It was just a weird moment of like well shit my pain is real I should probably be kinder to myself.
I generally like to use the term "neurodivergent" because mu first language is italian and, although it is utter bs, in Italian the word "disabile" is almost strictly confined to physical disabilities unless the context is a medical one
p. s. unrelated, but in Italy there is such a thing as a disability percentage that determines if you will get benefits and helps and to which degree you can be assisted :)
I've seen 'Neurodivergent' being used a lot more in the UK as well.
In America we use the same thing. Neurodivergent label.
In Quebec they use 'personne en situation de handicap' (Person in a handicapped situation) and it's pretty vague as to who they include in that grouping. The percentage thing is or was common in Canada, I don't know if it's still the case.
💜
France also uses the disability percentage, I think ! iirc you must have at least 80% major disability or something to get financial support
As far as mental health and disability/chronic illness: I definitely agree with the matter of the difficulty that comes with waking up one day "healthy" and then waking up the next day "disabled". I really truly believe that any diagnosis of a chronic condition should lead to an automatic referral to, if not therapy then at least a support group. It took me eight months of coping alone to discover that there were other women out there in Facebook support groups who had my condition, women who had the same symptoms as me that my doctor was dismissing, women who had the same stories as me. And I spent the first two days after joining that group just reading posts and crying because I'd spent eight months feeling stupid and annoying and hysterical after every time I had spoken to my doctor but every single thing I had done or said or felt was here written by other people and had a dozen comments from other women up and down the country saying "Yeah that happened to me too, this helps though so you can try it out". It would have taken my doctor 30 seconds to say "Hey this is the condition you have. There is a National Society that has a lot of information about it on their website and links to support groups for people who are living with it." Instead no one even explained it to me. I had the condition for three months before I even found out it was chronic and incurable because no one had told me in the hospital and I thought I was doing the right thing by not Googling it (and when I did Google it it was such a fucking broad diagnosis it was functionally useless to me anyway trying to figure out what it was on WebMD and the NHS website). Chronically ill and disabled people need to be taught how to cope with being chronically ill and disabled. Not just given a name of a condition and a 3 month follow up appointment.
As much as I love therapy and support groups for what they can do. I think you need to be careful when talking about automatically requiring people to have those things as someone who has trauma from being forced into such groups as a child. There are some very negative effects that can occur when it is not the patience desire.
I completely agree with making it available, but not mandatory. Mental health is health. Everyone can benefit from support or care around a stressful situation, and a physical health challenge is definitely a stressor, but I wouldn't force it on anyone.
@@ArtemisScribe I am very glad you found a support group that helps you. I do think that's very important. I was put into a multiple pronged program which on the surface sounds great. But in reality had a lot of problems particularly as a child who was put into an adult program. I personally found the Internet to be a better resource for how to live with my conditions then any doctor and I've had some very good ones as an adult.
@@GeekmomD The way I read this was not that it should be mandatory for people to go (definitely not) but that it should be mandatory for doctors to tell patients they diagnose with chronic illnesses about support groups to help 👍🏼
It's frustrating when I can go to the doctor and be fine and they don't say anything is wrong when I honestly struggle but for that moment I'm ok and they don't see it
I got told my Urologist, who has met me all of three times that (and this part is a direct quote) "you are the most healthy ill person, I have ever met". When I asked him what he meant he said I didn't look ill. Seriously dude? You are a doctor, you should know better!
Never identified (is that the right word) as having a chronic illness until this year, despite having asthma since I was a baby, because I was quite lucky in that I “just” got one or two chest infections (or maybe a lung infection) every year and can still do sports etc as long as my inhaler is with me but when covid hit I was suddenly thinking, “oh actually i really need to watch myself here because I have a respiratory illness that is never going to go away, even tho I’m mostly fine.” And THEN I realised that most people don’t lose out in 2-4 weeks of work/school/uni every year because they can’t breathe properly.
Your videos have been a weekly highlight of mine for years because of the vintage fashion and the disability education (lots of my close friends and family members are either disabled or chronically ill) so even though no one asked for my thoughts, this video seemed like a very good and safe place to write them out.
Tl, dr: I’m asthmatic and never really thought about it too much even though it affects my life everyday until Covid hit.
Same boat here
It's really interesting that other people also realised that their asthma is an actual impactful chronic illness this year. Definitely makes me feel less foolish :D
@@pucklian6499 aw yeah for sure! Think this year put living with lung conditions into perspective for a lot of us who have asthma etc mildly - moderately because for the first time ever we were at high risk of something unknown due to it. TEAM WHEEZY X
@@pucklian6499 I did but then I wasn't allowed to take the vaccine earlier along with people with other comorbidities because I hadn't been hospitalsed in the last six months at the time... 🤦🏻♀️
When my heart rate never dropped after birth my mom was told it was terminal. When I lived past the age the doctor had picked for it to be terminal it became a “heart condition.” At 39 I got told it was a BIRTH DEFECT. Same person, same heart, different doctors. I’ve given up trying to figure out the label; currently I go with “I’ve got this funky heart thing.”
I have a congenital heart defect too, diagnosed at birth. I’m glad you were able to finally get a clear diagnosis! It’s hard to find a real label. Sometimes I say birth defect, heart condition, CHD, chronic illness, etc. Hope you’re doing well💗
I was diagnosed with arthritis when I was 4 and I say I'm disabled or a wheelchair user depending on the situation. I recently heard the term Spoonies. While I agree with the "spoon metaphor" (my physical long-term illness causes fatigue), I can't bring myself to refer myself as a 'Spoonie'. I find it a bit cringey and cutesy but each ti their own. I feel the same about words like 'handi-capable'.
The spoon metaphor is great for explaining to other people how my mental health issues affect my ability to do things, but I would never call myself a Spoonie. I feel like that term diminishes the severity and medical reality of my condition. It's not a quirky personality trait, it's a legitimate medical condition. But maybe I'm too uptight, lol.
@@nataliestanchevski4628 Agree completely. I think I don't like Spoonie because it doesnt convey the seriousness of my situation.
Yeah I use the metaphor all the time but don't call myself a spoonie. Much in the same way that I know that my being autistic heavily shapes how I experience my gender identity, but don't choose to use "autigender" which some autistic people use to describe their gender (usually boils down to ??? gender). I do say disabled because I have a variety of different things wrong which impact my daily life to an extreme degree. Or extreme to me anyway. And they've been things I've pretty much always had, just only now have names for. Some have got worse over time (dislocating joints and muscle pain associated with said joints being silly) and others have just always been there and always will. So I felt it a lot when Jessica spoke on needing different language to talk about "had and lost" and "never had, never will, may even get worse". Like so much of mental health stuff revolves around "recovery" but if your mental illness is something you are born with, how do you "recover" from it? There is managing it on a day to day basis, but a life-long thing doesn't just clear up.
I call myself a spoonie because it makes me feel connected to other people who have to ration super limited energy in a way that's really hard to understand for people who have never experienced it. I never saw it as cutesy before, since I never saw it as anything but for other spoonies who already get that it's not remotely trivial. I don't see Aspie or Enbie as cutesy either--in my brain it's just a way to say "I am like you" and nothing like the patronizing vibe I get off "handi-capable." It helps knowing that "spoonie" was coined by us spoonies, not by someone outside labeling us. In fact, I kinda like that it's opaque to anyone unfamiliar with spoon theory.
@@crosita1 a perfect example of why labeling is so difficult. It's great that you have a community of like minded Spoonies and that you get comfort from the name (I'm not being condescending, I think whatever makes a person happy and helps them deal with their situation/condition is valid.)
Language is confusing
Too true Jessica too true.
I usually say “medical conditions.” Migraines, Diabetes, IBD, Anxiety/Depression. Among other things. Which by themselves would be manageable... altogether, all the time. Is nope. Just nope.
Watched the video “I was wrongly diagnosed” and I was shook at how many things I have with Ehlers-Danlos syndrome as you were listing. Now I am in physical therapy and working on it because I heard about it here! It was so nice to put a name to it too! Also have chronic fatigue! Jessica is my British twin!
From being terribly confused between chronic illness or disability as jessica illustrated the differences
The moment jessica said chronic illness is a disability gave me such a sense of clarity.
Absolutely loved the video and thank you jessica for explaining the topic so well.
I usually use "disabled" for brevity's sake...however, in the US, "disabled" often makes people think you're on Social Security Disability Insurance. And I am not (yet...sigh). So, I only say "disabled" if I'm speaking to someone who I think won't be an a$$hat and go on an anti-disability rant. If I don't know the response I'll get, I'll say I have a connective tissue disorder and usually people don't ask follow up questions to that, lol. I'll just add, for brevity's sake, that my disorder causes me to have a number of problems and that's typically enough to stop people in their tracks. But sometimes there is a nice and curious question who asks thoughtful follow-up questions, which I am happy to answer. I do understand that people are hesitant to ask too much of the disabled because they are afraid to offend us. With my family, I just refer to "before I was sick" and "after I was sick" even though I've had problems my entire life. There was just a period of time when I got worse very quickly so it's just easier to treat that as the time "I got sick" with those who are very aware of all my problems.
Honestly I feel validated by being on SSD. I don't have to "justify" not working to randoms because I already did so to the US Government's satisfaction. And we pay into the SS system from every paycheck very specifically to have coverage for disability. So while I don't meet many people who would be jerks about it, I feel like being governmentally recognized gives me so much confidence.
I studied for my disability application extensively and intensively and still feel massively fortunate that I got accepted, especially on my first try. Something like 2/3rds of people have to appeal twice before that happens. So not being on it definitely doesn't invalidate you either, but for me at least I felt it's made things easier socially, even if it's mostly just affected my internal confidence.
Don't you just despise "anti-disability" as an additional political stance right-wingers take, along with "anti-immigrant", "anti-tax", and you know how many others they like to hate on. Why don't they add "anti-elderly", I'm sure some of them will when it's the next thing they think is "OK" to rant against. They really have had their ire misdirected in America, as far as WHO is actually making people's economic lives unhappy. HINT--- It's not us.
@@argusfleibeit1165 100%!!!
Ugh I feel this so much. It's so hard here I have my hearing in a few months. I still say I'm disabled because I don't feel like telling everyone what's up with my health. And usually I walk with a cane anyway so people haven't been too bad, but I get a lot of people being mean about my age and being disabled. I'm 28 and people are so messed up over the cane. 🙄 I wish you good luck in getting disability, I'm sorry people are asshats. It would just be great if people were a little more empathetic sometimes!
Since I'm not fully diagnosed yet because no one can tell me why I feel horrible constantly I use disabled. Just wish I could get answers. 😔 I have EDS but that's not the entire picture.
I feel this 100%
Dear lord, yes.
I feel this so much.
This is completely me. EDS and POTS, and I use the word disabled because at the end of the day I don't really know much about why I've felt awful since middle school. I do know the end result is me being disabled.
I’m both chronically ill and disabled. I have insomnia as part of autism, allergies, asthma, diabetes type 2 and hypothyroidism. Oh and migraine and disc hernias in my lower back.
I’m pretty sure the insomnia was a BIG contributing factor to developing diabetes in the first place. The combination of the “things” also cause me to get virus infections more easily.
Honestly the list of “things” is generally longer but most of the not mentioned things is directly caused by the things mentioned and I can’t be bothered to remember all.
Andrés Fincher same. I’m still in the process of being diagnosed but EDS and arthritis seem to be key components
For me :
Chronical illness / health condition : need medical care (therapy, treatment...)
Disabled : need accessibility (accomodations, help, accessible place suiting your limitations and needs...)
I think many if not most disability are also health conditions (wich is why I 100% agree that disability write includes chronic illness issue), but that the opposite isn't necessarily true. For example needing glasses or allergy medication is a health condition and can technically be considered a chronic illness, but in many case with the right treatment you'll do just fine.
That also mean that one diagnosis is not necessarily a health condition and or a disability for everyone.
My autism is disabling but doesn't require medical care, but some other autistic people do need some related to their autism (and that's fine !)
My endometriosis needs health care, it's a chronic illness but isn't disabling when I'm on my treatment because it works perfectly for me, but it is for other people whose treatment don't stop the pain.
And my HSD is both a chronic illness for wich I need treatment and a disability for wich I need accessibility
With those définition, I'd add that when a health condition cannot be managed with medical care consequently almost always is a disability because you need other type of help and support to live with them.
i really like that way of looking at these terms! it makes sense to me
I feel like this is perfect and totally how I've been looking at things without even knowing it. Like I need accommodation with my Tourette's but not medical treatment and with my mental disorders and ME/CFS, I need both and this totally explains why I thought of my Tourette's in a completely separate category from my other "issues". I would also switch whether I referred to my ME/CFS as a chronic illness or a disability based on the circumstances even though I always consider it to be both and I couldn't have explained why until this comment. When I'm discussing the medical treatments that I use for my ME/CFS I usually refer to it as a chronic illness and when I'm talking about needing accommodations because of it I usually refer to it as a disability. This is so long, but this comment honestly blew my mind like it explains so much.
Exactly. Its totally down to how it affects the individual. I'm also autistic and it does disable me, but the only "medical" help I need in regards to it is getting appropriate talking therapy that takes that into consideration for helping with my mental health conditions. Which technically classes more as accessibility. Though for me, I would say that my eyesight is disabling. I have to wear glasses every day due to severe short sightedness and astigmatism (had one optician be so excited by my degree of astigmatism as she'd never seen it so severe outside of a textbook). If I knock my glasses off the bedside table when I'm reaching for them, that's it, I'm screwed unless there is someone else who can find them for me. I can't wear contacts as they don't make my prescription, my head is ridiculously tiny so I only have a very small (currently zero - yay) choice of frames I can actually wear... I can't read number plates on cars the required distance away whilst wearing my glasses so couldn't legally drive. And my eyesight is likely only going to keep on getting worse as I have family history of relatives going blind and my eyesight was more severely bad when I was a child so... Like it really does disable me because I have to be very careful what activities I do due to increased risk of detached retina. My eyes are also super sensitive to light so that heavily impacts how I'm able to interact with the environment around me. Like going into shops is HELL due to how bright everything is. So I basically don't go anywhere where I can't control the lighting of the environment around me. Basically means I don't leave the house except for very rare occasions like the special treat of going to a doctor's appointment.
The only reason people don't class poor eyesight as being a disability is because glasses wearing has become so normalised, acceptable and even fashionable over the past 20 years. Growing up I was still bullied for wearing glasses because it was seen as a bad thing to need glasses (just like how lots of other disabilities get treated still). Like today its possible to buy glasses purely for fashion purposes. Honestly if people were doing that to other disability aids like wheelchairs, people would be in an uproar about it. Also fun thing is that the fashionable status of glasses has basically made it so that frame shapes change on a whim. Which means if you are like me with very particular needs (due to physical size, plus eye spacing, plus prescription) you're shit out of luck when you need a new prescription but the current fashion trend is only for larger or oversized plastic frames which just can not and do not work for me. What to me is a required disability aid has been usurped into a fashion trend which basically means I can't update my out of date prescription as they don't make the frame sizes/type I need now. Yay! But totally not a disability right?
@@quartzairmet9885 yes same ! I will say "because I'm chronically ill" when talking about for example who fatigue changes my ability to do stuff, and "because I'm disabled" when talking about complicated access to transport for example.
@@AlexaFaie I definitely get what you mean !
That's why you can't just say a diagnosis is always or is never a disability or a chronic illness. For me being short sighted is really not a disability, but because it's not very severe and I have easy access to glasses and contacts. So it's just a matter of having the medical aid I need. But I can totally imagine that in more severe forms and/or when medical care is to expensive or inaccessible it can be very disabling.
I've never been this early! I'm autistic and use identity first language which is the majority preference of the autistic community
At least in Germany your chronic illness can be counted as a disability. A chronic illness is a medical condition that has been going on for 6 months or more. There is also a sort of list of disabilities with percentages that the government uses to determine your "grade of disability". Based on that you get different benefits etc. (the system is not that great though but that could be a whole video topic)
basically, I'm chronically ill and my illnesses (and surrounding tbh) are disabling me from living the same way someone my age would normally live = I have a disability. :)
That's pretty much my logic around it too!
Same, also the system in germany really goddamn sucks
I struggle to know what language to use for myself. I have fibromyalgia as well as generalized anxiety disorder and major depressive disorder. I have a hard time working because of my flare ups. My rheumatologist has used the words “disability” and “chronically ill”. But I feel like I am not “ill enough” for those labels, like it takes away from other more seriously ill people.
This makes me sad. We do too much comparing and competing and not enough including and supporting. I have a horrific chronic pain condition. Anything that recognizes that some people need to be accommodated a little differently to live a normal-ish life through no choice of their own, in my opinion, makes my life easier. It makes society more aware that someone like me might need accommodating if they have encountered someone like you before. It makes people more open to accommodating either of us if they have encountered someone with an extremely visible physical difference just living a normal-ish life, and the reverse. None of us are lesser than and we need to get rid of that thinking and recognize our similarities instead. Make being disabled in lots of ways normal, and we all have it a little easier navigating the world. So if you want permission or support to call yourself disabled, I am behind it 💯. We come in all flavors and people can just get used to it! One of us! 🤣
I hear you on the feeling of taking away from "really" disabled people. But I haven't been able to cook a meal or drive on the road for three years, so yes, while my problems are all neurological and the rest of my body is fine, this is in fact disability.
I know what you mean, I’ve got the same things as you (plus a few more) and have only started referring to myself as disabled in the last year or so. I received my fibromyalgia diagnosis nearly twenty years ago but only started really feeling truly disabled the last few years. I’ve embraced the term disabled because I was so frustrated with people offering “get well soon” wishes if I mentioned my chronic illnesses
Just because other people are also disabled or "more" disabled doesn't mean you aren't also going through a chronic illness or disability and that it is valid. They can be going through a valid struggle and that doesn't negate yours. I have fibro, arthritis, PTSD, Bipolar 2 and and TBI I use a cane to walk most days. It hurts to bend over or get out of bed, or basically do anything lol. I've been limited in what I can do in life. I call myself disabled and beautiful. And your struggles and life experiences are just as valid as mine or anyone else's.
I have spastic diplegia cerebral palsy and I recently found out I have major depressive disorder based on depression as a kid when I didn't know what it was.
My 5 year old daughter has cerebral palsy, and relies entirely on a feeding tube, so she's disabled, but she is very healthy. My 3 year old daughter looks and acts physically typical, but has other complications that cause her to have chronic lung disease and asthma and she aspirates; she's managing chronic illness. She's probably at a higher risk of complications if she contracts Covid. But it flips most people's expectations of thinking which child is more at risk and needs more protections in our current climate, the child without visible concerns has to be more careful. Thank you, Jessica, for the work you do to create these videos.
Hey Jessica! I just want you to know that you are the most inspiring TH-camr out there right now! :) Every video you post makes everyone's (mine included) day a little brighter! Thank you so much!! I´m not disabled, but through your videos, I have certainly become more educated about disability and chronic illnesses. ❤
Thank you so much!! That's such a kind thing to say ❤️
this might be slightly unrelated, but i read about that tv show she was on- britain's missing top model- and it seems like it was really horrible and abusive to the women in it. they bullied jessica for not having obviously visible disabilities, one mentor refused to speak to two women in sign language, they eliminated one woman for not speaking- when she was deaf and greatly preferred to speak in sign language,, and there are so many more examples.
there's something in here about how they failed to actually include all types of disabilities even though that was their goal- but i'm not quite sure how to phrase it.
I watched it, having just been diagnosed myself with a bunch of invisible disabilities, and it was AWFUL. The contestants that had visible physical disabilities (eg. missing an arm, using a wheelchair) clubbed together and basically asserted that the others were faking, less disabled, didn't deserve to be there, were incapable. They expected adjustments for their disabilities, while mocking or dismissing adjustments for Jessica and the Deaf models.
@@castorj.b.1257 I started watching "Deaf U", which is a sort of a probably mildly scripted reality Netflix show about a university for deaf students. It really struck me that the students with Cochlear implants and hearing aids or those that didn't sign 100% of the time were shunned, like they weren't properly deaf.
@@lauren8627 My understanding is that, especially in the US, there's a very distinct Deaf culture, which obviously includes things like signed language (ASL in the US, BSL here for example), universities for the Deaf (like Gallaudet) etc. I think it's more common for there to be entirely Deaf schools which naturally grows a Deaf community in a particular area. Theres a lot of pride in Deafness, and I think maybe some Deaf people see people who get cochlear implants as 'selling out' or ceding the fight for disability rights in the name of an 'easy life' (which obviously it's not, but still). It's a tough debate, and since I'm not Deaf I'm not remotely capable of saying who's right and wrong. But it seems to stem from the fact that the Deaf community has a collective culture and language in a way that perhaps other disabilities don't since we mix more freely with the 'able-bodied/neurotypical' world since we share a language.
@@ambertapping7919 it's also worth noting that for centuries, hearing/abled people sought to stamp out sign language and force Deaf people to lip read and just finger-spell (this is called Oralism). There were such abusive practices at schools for the Deaf to literally beat/starve the sign out of the students. Sign language survived covertly, in secret, through pure will power and a collective fight. That history feeds into a strong pride and sense of ownership of sign language, and also a distrust of hearing people or those who seem nearer to Oralism. Of course it doesn't make prejudice towards *anyone* ok, like.. at all... but you can see where it stems from, and things that stem from fear and survival are hard to overturn.
This is the biggest mood. Feeling like you are gonna get better and just realizing this is the rest of your life.
You're a gay icon! I identify as chronically ill and disabled. My chronic illness is mostly separate from my disabilities, although it caused one of my two disabilities. For me, they are definitely two different aspects of my life. I've also been both for as long as I can remember, from about the age of six which is because of my illness, so I never really had grapple with accepting either of those things. I think using both helps other people understand that there are multiple things happening in this body. Although I do get people pitying me for having so many issues and they really don't need to because they are just things and I literally can't remember what it's like to not have them.
My mum took two years to die of cancer. I think we managed to get her disability benefits for the last three months of that and never managed to get me any carer's allowance. The government really doesn't help at all
My like was in support. I actually dislike what you had to go through. The government sucks.
Did you hear them yesterday? They’re going to be more “generous” now...
@@jillyfish72 Hahahahaha. What like with doing tiers and saying in tier two you can't go out anywhere in groups (like to pubs) but pubs don't have to close, then tier 3 the pubs have to close. And they're going to be "generous" and give everyone whose job is affected because they HAVE to close some money. But you're shit out of luck if you work in a pub in a tier 2 area because they weren't specifically told to close? Generous like that?
This whole fiasco is well... a fiasco isn't it?
@@AlexaFaie 🙌
That was the cutest and funniest promo advert I’ve ever seen. Love the bit about the fact you can claim you’ve known all along. 🤣
You’ve really helped me not feel so gloomy (and ashamed) about what I have to deal with, on a daily basis. Thank you, for being you 🥰
"We're all just mushy little creatures bobbing along" Haha I love that
Thank you Jessica ❤️I didn't identify as disabled until I was in my 20s because I wasn't 'disabled enough' (despite having obvious scoliosis and low muscle tone). I recently found a great neurologist that is getting me genetic testing to learn more about my disease. Having to grieve my mobility is really hitting hard esp after a horrible PT experience yesterday. Your videos help me a lot! 🌈
I've been depressed for the past 10 years, and it's probably never going away. It's something I've learned to deal with and live with, so that I can still kind of function in daily life, but every. single. thing. is still very hard to do. Physically nothing is wrong with me so I feel like I don't deserve the term 'disabled'. Even though my depression does really seriously affect my ability to function normally. How do I get over this mindset? With other people who have something that hinders their functioning but is invisible I would never tell them they're not disabled. Why do I do this to myself?
Chronic depression and anxiety here as well, so I understand the hesitancy. But there is something physically ‘wrong’! I know we like to take about depression just “being in your head,” but depression and other mental illnesses are linked to the brain not producing the right level and combination of chemicals. My body doesn’t naturally make enough serotonin, so I have to take medication to get it to work right. It helped me to start framing it that way- just like a diabetic needs to take insulin, I need to take medication so my brain works correctly.
@@j.sowards8429 thank you so much for your reply. I hope you’re doing okay ❤️❤️
One part is all those pseudo motivational cow excrements that downplay what depression is.
But it's also that it become a part of us, somehow. We have to get used to it, so it's hard to imagine how it is to live without it.
I am only recently starting to feel well with myself (well, I was before... 2020 as a whole). And that's only then I realized how much I had internalized.
I've been looking for this comment! I'm in the exact same boat as you and I've been hesitant about using "disabled" or "chronically ill" because I didn't think I deserved it or was ill enough.
@@sarahk8053 Exactly! But that's the thing with things like depression I think. My depression always likes to tell me I'm not sick enough to deserve help and I'm taking help away from peole who really need it and who have it worse than me. But I feel like that's just the nature of this mental illness.
Very important thing Ive learned over ten years of living with lupus: Your first priority is survival. Wellness. Not what other people think, what you deserve, or how much you've paid into the system. Do whatever it takes to be ok. Drop kick anyone or anything that negatively impacts your health.
Oh Jessica this video came at the perfect time. Ive been feeling just a bit shitty about my chronic ilness today.m especially since tommorow is my birthday and its most likely ill be sick in bed.. your videos always cheer me up.
Now i get to enjoy your jokes and funny sense of humor.
Anyway back to the point.
Thank you for this upload it will cheer me up. 😍❤
Happy birthday for tomorrow! Hope you can still have a lot of fun ♥️
Have a happy birthday (for tomorrow) stay safe 🧡🧡
As a disabled/chronically pained person and as someone who has spent eighteen (and counting!) birthdays in pain, I can relate! Happy birthday!!! You are not alone.
Happy Birthday! (for tomorrow). I hope you have a lovely day (even if you're in bed) and I wish you all the best 💗
Hope youre able to enjoy your birthday, whatever you end up doing 😁🎉
I'm doing my PhD in creative writing and disability studies. I have (very mild) Cerebral Palsy, and I consider myself just 'disabled' but the chronic fatigue and pain could be chronic illness, I suppose. While researching, I came across the term Hedonic Adaptation; this is the idea that people have a 'baseline' happiness they return to after a big life change, positive or negative. This can be negative for, say, newlyweds becoming bored, but for us (if we have become disabled later on, or if we get worse) we are able to return to that baseline and adapt. This is good for us because we are able to live with our new normal.
I tend to use both “chronically ill” and “disabled” interchangeably to classify my type 1 diabetes and other non-diagnosed issues including chronic headaches and intense period pain. However, I sometimes feel a bit weird using “disabled” since society has conditioned me into thinking that only wheelchairs, blindness, and Deafness count. All in all, language is weird, and disability is a lot more complex than able bodied people think and say it is.
I use chronic Illness or chronic pain more than disabled because (in the us at least) being disabled and disability rights are generally imagined as being specific to wheelchair users needs for navigating with their wheelchair.I find that discussing it as a chronic illness gets me the help I actually need, as someone whose needs for access aren't wheelchair related.
I was recently diagnosed with a chronic illness and I've just been binge watching Jessica's videos for reassurance skdhsnj
I'm in shock right now. I ordered some supplements for my husband to help him with some concerns I know he has with his skin and joints... then I went to make my own and put that I was mostly concerned with brain health, stress, and oh yeah, might want to have my body prepped for kids for the next few years ahead. They asked me to pick top priory goal/concern and I choose brain health. I finished the questionnaire and only have two supplements suggested for my pack... neither for brain health, both for prenatal support (and one also for bone health because of where I live)....
I have no words.
My husband has all these wonderful supplements recommended by them in his pack... and they really are only recommending me calcium and a prenatal.
I agree with jessica completely on this one. it is like a lot of spectrums of rainbows all crossing each other.
And yes, they only care about whether we can make babies or not. I am nowhere near getting a diagnosis for my mental or physical issues (well, i am not even trying anymore to get a diagnosis) but when i was sitting in front of a doctor talking to him about my scoliosis and whether it could be related to other issues I had and how much in constant and extreme amount of pain i was, my mother was sitting beside me and only asked him one question "would it cause any future problems for her being a woman?" * meaningful stare until the doctor realized what she meant and told her to not worry* . yes, she ignored my pain ( well, actually she had ignored it all my life and actually likes to call me a attention seeking liar) but all she was worried about if i could reproduce like a good little woman that I was. Fuck that shit! i don't even want to have kids.
My jaw just about hit the floor when I read what your mom asked the doctor. I'm so sorry to hear you experienced that... My mother undercut my pain relating to my disability as well, I grew tired trying to appease her when she has such a lack of true empathy. I'm decidedly not talking to her for now, to protect my own peace. I also don't want kids, probably in connection with my trauma from her but also because I don't want to have kids because I feel like I'm expected to.
I've got just two more years left before they consider me enough of an adult to be allowed to get my tubes tied if I want. Like they literally wouldn't even discuss what it might entail with me prior to turning 35. LIKE WHAT? I knew when I was a very very small child that I didn't want to have a baby of my own, I'm severely tocophobic, and I don't even want to adopt because I just can't with children (couldn't even when I was one). But its been a life full of being told "oh you'll change your mind when you grow up". My Mum said last year that she's finally "accepted" that she's never going to have grandkids. But like my brother could father children still. They'd still be her grandkids. Her lack of support on that is why I never told her about getting an abortion (long story as to why I couldn't get morning after pill, won't go into it here as its triggering both for myself and probably others).
My Mum was very fond of the whole "oh but you're too young to be in pain" or just saying that "if you think that's bad wait until you're my age thing". But then she'll also downplay her own pain. It will be blatantly clear on her face that she's in pain, but she'll refuse any pain meds to help, say she's fine and just tries to ignore it. I mean it took us years to get her to stop eating things containing coriander because she "couldn't be sure it was that" which was causing her to experience rapid expulsion of bodily fluids from both ends and she didn't even like the taste of it. Guess what? She's allergic to it. And I have the same mild issues she had to begin with so stopped eating anything with it in before it became a more serious issue (plus it tastes gross) and she felt that it wasn't something I should be making a decision on so lightly. Like what? You want me to get as bad as you before treating it with the very very easy method of not eating it? When I don't even like it? ????
What are people?
@@kasmargueritecolwell7654 I also question a lot why i don't want kids.i never wanted any or to get married and it was never an obvious thing to me like to many other people that you grow up and get married and have babies. and in the beginning i thought it was because of the dysfunctional emotionally abusive family that i had or the pressure put on me as a woman or maybe because i don't like kids... but in the end i decided on that some people just don't want kids, they don't have that instinct to mother a child... but i still go back and forth on why i don't want them. I still sometime question if i didn't have the life i have lived until now and if i was free and able to be with the other half of my soul... would i want to live a "traditional" family life (married with kids in a nice quiet neighborhood where we could have evening tea in the garden)... but i can't quite imagine myself in that scenario ever...
@@AlexaFaie ikr... what is up with them thinking we owe them a grandchild?
My mother likes to compare my pain and her pain all the time and always make a point of "you are so young you can't be feeling that much pain". it's really funny to me how my back pain is a joke and a drama for attention but her back pain (or any other pain she might feel) is an emergency where i have to sit and listen to how bad i hurts and give suggestions to manage it or to go to the doctor with her.
Right there with you. I have endometriosis, which is recognized as a chronic illness in very few countries.
Only recently did the medical authorities in my country (France) start to talk about it and it’s mainly because they’re realizing it affects women’s fertility. You know, because debilitating pain is not worth trying to find a cure for -_-
Oh crap, you had a spinal headache for a couple of years??? OUCH! I tell people that everyone is a little bit crazy, it's just some of us are more certified than others.... lol. I have severe OCD and PTSD. I am currently disabled because... well employers frown upon spraying customers with disinfectant and hiding under your desk. I joke because... if you can't laugh at it, you really will go full on crazy. BUT gotta tell you, these days with a pandemic raging all around, I don't look nearly so crazy now.
Another OCD person here! That was really funny!
Yay OCD...What fun...definitely did NOT trigger digestive problems like real quick into the pandemic for me caused by crippling anxiety and OCD. Nope. I’m fine. 😐
@@dont_harsh_my_mellow The anxiety is REAL. Sometimes just how devastating it can be is often glossed over by the focus of society to focus on the behaviors the anxiety cause. Kudos to you for making it through the day, and every day.
@@PhoebeFayRuthLouise Thank you!
@@patriciakellyadams134 Thank you! We have to have patience with our bodies and minds and learn to work with them and be kind to ourselves when we don't get things done how we wanted.
Just here to watch your absolutely gorgeous hair for 24min straight (or gay?). I don't mean that your message isn't important, it's just that you're so pretty (and my high femme role model haha). Have a good day!
Omg I am here so early! I have Ehlers-Danlos and mental health things, and I use ably-disabled. I explain it as I have a chronic illness that causes disruptions in my abilities, therefore making me disabled with varying degrees of ability depending on activity/day and such.
I got diagnosed with MS in September 2019 and because of covid/brain inflammation they gave me no explanations whatsoever, you lady just blew my mind, and it feels weird to say thinking about the conditions of my brain
I'm not disabled physically but I have an Personality disorder that is pretty much interfere with my life. And also something I feel like I just have to learn living with and find ways to get to a point it's not as energy draining. But since I feel it's something I'll permanently live with it feels weird to call it an illness cause I feel illness imply that you'll completely recover one day.
I feel like we generally lack the vocabulary or the clarity of "can we use chronically ill or disabled" with mental illness. I have chronic clinical depression and I always feel like I'm not allowed to use "disabled" or similar terms.
As a "disabled person " who lives with chronic pain as well , I always said that I never felt disabled from being in my wheel chair , but rather from the pain . That is what keeps me confined most days . If I felt good , I'd be out burning around in my chair all the time , but the terrible pain that I have to live with often puts me right in to bed . So I agree the term disabled can have many meanings . Thanks for always enlightening the planet Jessica . Greetings from Canada
Ah I'm still watching the start of this video and it is hitting a bit too close to home hahaha- accepting the label disability can be a little daunting, especially when you're struggling to truly understand it to yourself
I got my first diagnosis today, I've been struggling my whole life and this should open the door for many more of my issues to make sense. Im very excited and happy 😊 thank you Jessica for giving me hope and entertaining me and inspiring me while I've waited a lot of yrs to get the help and answers im needing. I still have a long way to go but im finally making progress and thats exciting.
I've been chronically ill for over a decade and it was only this last year that I called myself disabled. People in the us at least have disability pegged as people that get disability benefits and cant work. I was constantly thinking "I'm working so I can't be disabled" plus I was in remission for a year and a half which made me feel like I was pretending to be chronically ill/disabled because I was able to stop for a little while.
We definitely do tend toward the "legal" definition of disabled, as well as assuming that without qualifiers that means totally (can't work at all) and permanently (no indication the status will change). But even within the legal definition, there is both partial disability and temporary disability--it just relates almost entirely to your ability to WORK because our culture is so massively work-centric. But if you do run into people who think this way, as most inexperienced people will here, it could be helpful to use "partial disability" if it relates to something like workplace accommodations. It gets people thinking without needing to completely instantly reverse their world view on ableism or our cultural work productivity (personal value as human capital meritocracy problem) views to understand you in that moment.
@@crosita1 that's funny because I actually called myself "part-time disabled" before I took the plunge and realized there's no shame in being disabled. I think the stigma around it is what keeps people from identifying with it. The stigma of being lazy and wanting handouts, or the American obsession with disability is a widely abused system (when its not). I know that was hard for me since my mom is part of the 1% who did abuse the system, so its hard to seperate myself from my upbringing with that identity.
@@evelynkrull5268 Great big supportive UGH for that generational trauma. ❤️
Such a nuanced discussion of this complex topic. Thank you, Jessica!
I use the terms disabled, neurodivergent, and sick a lot. I mostly call myself a disabled woman but when talking to my kids and such, I explain I am sick and it won't really go away.
This is amazingly similar to my story. I was disabled as a child, fixed at 15, severely re-disabled at 46 and it took a year to figure out how to “fix“ for disability (now I am permanently disabled). Now six years later my genetic disorders are coming too light.
Thank you so much for sharing this Miss Jessica. You are not alone and not completely uncommon. 🙌🏼🙌🏼👍🏼👍🏼❤️
This is a great discussion, and I love how you articulated your thoughts! I am chronically ill and my chronic illnesses are disabling, so I also consider myself disabled. Kind of the mirror image of you, Jessica. It took me a long time to get to that point, though, because I was undiagnosed and sort of expected everything would clear up once I got a diagnosis. That wasn’t the case, and finally accepting the label “disabled” for myself was such a positive for both my self-understanding and for my ability to ask for access and assistance.
I also often see differences between people born with their disability and people, like me, who acquired it later. Even in some of the groups I’ve been a part of, I’ve seen a difference in thought in people who acquired their disability as a child/teenager versus as an established adult. Having fatigue or pain seem like big players in how people view their conditions, as well. I hope we can honor and learn from all our experiences and foster an inclusive community. I think our diversity may be our power.
My disability has never slowed me down. Society’s refusal to be accessible to all humans is what slows me down.
thank you for uploading... i’m having a bed day and your videos always help me feel better. i hope you are doing better/continue to do better. love you!!
Jessica! First of all, ypur hair is gorgeous!!
Second, that Care/Of business sounds soo helpful! I'm so glad it exists:)
Third, I didn't really undersatnd what do you mean who you say someone is "ill"? Because having a "classic" (barf) disabilty like being paralized can be sort of like an illness of the body, no? If something is not right with some parts of your body, can't it be considered an illness every time?
I understand that having both your diagnoses is a terrible mix, but please, when you say that "just" having EDS on it's own is perfectly managable it felt pretty bad for me. I'd say it's a terrible condition to have even just on it's own (at least in my case, I know it varies greatly from person to person). Please don't say it like that.
I get what you’re saying, but for Jessica of course just EDS would be perfectly manageable, she’s managing 2 diagnoses so from her perspective it would be a lot easier to have just one, it doesn’t make what she’s saying universal, and I agree she should have added that either on their own is still awful, but she’s perfectly valid in what she said.
@@Lexi-zx3qn Except she doesn't actually know that. She herself stated it's hard to know for sure which symptoms come from which disorder because there's so much overlap. So if the HNPP were to completely disappear there's no way for her to know if half of her problems would go away, thus making the EDS feel so manageable, or if only a very few specific symptoms would disappear and otherwise leave her in mostly the same state, making management no different with the mess of EDS and all its comorbidities. It's really just a wishful statement of fantasy that doesn't actually have meaning, like when I say I wish I had cancer instead of all my issues because then a) people would acknowledge my illness and b) I would have viable treatment options. But I say that out of frustration for my reality, it's not a statement that actually his any merit. I could be just a bad off and have a form of cancer that's not responding to treatments and have people who are uncomfortable being around me. Her fantasy statement is no different than mine. She wouldn't *actually* be better with one diagnosis, she just assumes so out of pure wish. And you agreeing it's pure conjecture.
EDS is a highly variable condition, for some people it is pretty manageable, for others it really is much harder to manage. She was referring to her own condition, not making a statement about EDS generally
0:10 Aside from my native Dutch, I use English, German, and Esperanto.
1:12 You just gave me an idea. I think I'll make a manual for me on my website.
7:36 I seem to remember hearing Dr. Mike say that supplements are (usually) not necessary.
8:48 You did, huh? ;-)
As a disabled person that studies inequality and culture, I have a paradoxical view on the term 'disability':
On the one hand, the word makes it seem like 'disabled' people have less ability than 'abled' people, although they might be better at many things that society simply considers to be unimportant. This is why *differently abled* or *diverse ability* may possibly be a good alternative terms when seeking accommodations.
On the other hand, I have noticed many 'disabled' people disassociating from the word because they don't want to be associated with other types of 'disabled' people, as though they are above them. For example, I read somewhere that I (a hearing person) should not treat deaf people like disabled people by talking down to them. I reject this type of dissociation from disability - it implies that disabled people should be treated as less than, or that there is some sort of hierarchy. I would never talk down to any person on the basis of ability. There is a difference between rejecting a label and placing yourself above others.
Just my 2 cents.
P.S. this is a very short commentary on very complex issues, if anyone would like clarification on any of my points please feel free to ask without fear of angry arguments.
I have A BIG problem mainly with terms such as differently abled as they sound a lot like euphemisms that mask the seriousness of disability and play it down a lot. Most disabled people very much will want to opt out of being called differently abled in fear of it implying that their conditions aren’t all that bad and it also puts the burden on them to also then have different abilities when many aren’t exceptional at anything in particular or have something else to make up for their disability.
@@dont_harsh_my_mellow I absolutely agree with you, that is a very good point. This shows why I was hesitant to label my thoughts as definitive - the subject of disability is very complex, and one major issue is the absolute need of many individuals to have certain accommodations. I myself am struggling because doctors haven't been able to label some of my chronic conditions, which makes it impossible to get all the accommodations I need. Using the label 'differently-abled' would certainly not help with that. Thank you for bringing that up!
Hello! I'm legally blind and I've found taking the social model of disability into consideration versus the medical model of disability to be able to tackle the "issues" the "differently abled" label is trying to do. Lots of disabled people HATE differently abled, for a plethora of reasons I won't go into, but in essence the social model of disability states that those who are disabled are disabled by lack of accessibility and the typical bodied focused society, not solely by a medical condition or diagnosis. Though if you're studying disability I imagine this has come up before, just my 2 cents.
@@mamber4100 very good points. When I delve into this topic in my studies these sorts of nuances come up frequently, although my focus is not just on disability. The lens one uses to examine disability and the context in which the term is invoked seems to matter greatly when it comes to which terms are considered most appropriate.
I‘m currently in the process of accepting my chronic illness/disability. It‘s far from easy, especially since I have no idea what that illness/disability even is.
But using the words disabled and chronically ill is so, so incredibly freeing to me. For years I have tried to run after a cure and desperately tried to figure out what’s wrong with me, but now I have an umbrella term that I can use to describe myself. And I can finally let go of scrambling to get to the (possibly imaginary) light of being healthy, and instead focusing of making myself comfortable within the darkness.
I‘ll still try to find out what my problem is, but I‘ll know that my life doesn’t just begin after I‘ve found all the answers, it begins now.
I have been binging this channel for the past week, and it’s so, so helpful.
Thank you!
Life is confusing. Always. 2020 with a side of people are confusing.
Language is indeed complicated 😅 thank you Jessica for putting some descriptive words to the topic and clearing some of my confusion.
Since I moved to England I started to always answer I’m alright to the question ‘how are you’. Yeah, I feel stupid every time I go to the doctor trying to explain my vague but significant symptoms... no wonder they don’t take me seriously... one and a half years of nearly constant migraines, joint and muscle pain, brain fog, memory problems.... yeah, I’m fine just can’t get a job or social welfare nor move back to my country because of COVID. Excuse me while I mentally run up a mountain to scream my frustration.
At least the doc mentioned that I have chronic pain, but when I asked what we’re going to do about it... she shrugged it off and ended the appointment. Joy.
Sometimes I wish that my hair would change color depending on my pain. This way people would know that I am in pain even if I don't look like it.
Thank you for always just being so wholesome and educational and perfect *cry*
i’m working on getting officially classified as disabled (and on SSI) as my cfs/me gets worse and makes it nearly impossible to hold a job. it’s really been a struggle bc apparently most people w cfs aren’t severe enough where it’s automatically classified as a disability? mine is definitely leaving me unable to function normally though
edit: i was holding a job for a while but lost it bc i kept having cfs crashes so 🙃
Your hair is looking incredible stunning in this video!! So shiny and beautiful color
Would love for you to speak more in depth about medication and their stigma. I take a lot of painkillers (both prescribed ones and regular paracetamol) and am constantly being told I'm too young for it and am addicted to them and should just put up with pain. And so many people I know refuse antidepressants due to fear or stigma. I'm often being told I should just change my diet, take vitamins, do yoga etc instead of rely on medication. Would love to hear your thoughts on this
I relate to this so strongly. My doctor told me to do pilates/yoga to help my back pain but I've recently realised no matter how much of that I do, I'll still need to take painkillers regularly. And when I started having stomach problems the people around me immediately assumed the painkillers were the cause... Nope, I just have a separate stomach issue. No-one should be judged for taking the medication they need.
@@elexneonabingdon why is it always yoga or pilates suggested? It's almost infuriating how often its talks about like it will cure everything
I’m not on pain killers, but I get the diet and vitamin thing all the time. Like that’s not going to help the fact that part of my body doesn’t produce the hormone it’s supposed to or the fact that my brain doesn’t effectively produce certain neurotransmitters. I do feel like yoga did help with my muscle issues, but it definitely isn’t a pain cure all.
I agree with your analysis on the difference between a condition from birth vs. something that they could do and now can't. My 2 younger sisters both have an allergy to milk (among other things, but this is the most simple example to explain). The older of the two, J, has been aware of the allergy since she was a few months old. She has grown up never having milk in any form (aside from the occasional accident, or when there isn't enough of the specific protein she is allergic to to cause any harm). The younger one, E, has only known about her allergy for the last 4 or 5 years as her allergy reacted internally and was harder to find. When she first had to change her diet she rebelled horribly and would sneak food and was unfortunately making her other chronic conditions worse as a result. It is definitely a mindset of "I have always lived this way" in contrast to "I used to be able to do this and now I can't".
I don't know why but I really love it when she says "darling"
The collective sigh was much needed and ultra satisfying. A+
i have schizophrenia and autism and I consider myself mentally and physically disabled because of my physical symptoms (I have chronic fatigue, chronic pain and catatonia)
Jessica is such a ray of sunshine and joy 🌈
I've found that using disabled and chronically ill just depends on who I'm talking to, what we're doing or considering doing, and frequently just how I'm functioning that day.
Careof sounds like it would be very useful for me but I don't like the quiz aspect.... My doctors tell me what supplements would be good for me based on medical history and blood tests, and I don't really want to get a random little packet of vitamins I might not actually need. Is there a way to pick your own? The packaging sounds great.
I have to agree with you! I absolutely love and support Jessica but I'm a little concerned by this sponsor. Supplements can be essential when you are deficient in something, but only testing by a medical professional can tell you what you need. The danger of this quiz is that in the worst case it will cause people take supplements to 'treat' symptoms that may actually require a different medical treatment, and in the best case they will end up with very expensive pee!
You CAN choose your own!
@@aliced-j9576 Yes! A few youtubers I follow have been sponsored by them lately (mostly channels about disability or sustainability) and I just do not trust any company selling me supplements to know what I actually need.
As Mia already said above, you can pick your own, according to advice from a professional if you wish, which is great.
To add to that though, I agree that going to a doctor to find out if and what you should take is absolutely the ideal case, but there can be lots of barriers to accessing that kind of care. In those cases I'd say doing a quiz of this kind is better than what many would otherwise do, just taking something fairly randomly in the hope it would be good for them. You're going to be more likely to get something that suits your needs and deficiencies this way, and it's a lot quicker and more accessible as a quiz than individually gathering all that information.
Hi there! These delivery systems can be set up my chemists (pharmacists) based on prescription from your actual doctor! Talk to your doctor 😊
It's interesting that asthma is included on the list of chronic illnesses that everyone agrees on. I've had asthma my whole life, but I've never considered myself chronically ill. I think asthma is a spectrum condition: some people are barely affected and rarely need inhalers; some people have more severe, but well-managed asthma and take a regular preventer inhaler; others struggle to do basic tasks because of their asthma. For me, the latter category fits into the chronic illness box, but the others don't. Personally, I see my asthma as just a bit inconvenient - I have to take my inhalers twice a day, but am otherwise relatively unaffected by it in general.
My body is basically a clusterfuck is how I describe it. Between disabilities and chronic illness that's how I describe it. Yes the behaviour of my choice to if I have a child has often been put over the pain I am in. If I want to yeet my uterus for the sake of pain I should be allowed to but nhs says no because children.
My gender and sexuality are clusterfucks too.
I've been disabled since birth with other things just keep appearing up and I've just rolled with them. Helps I've never been fully healthy and that's helped me understand everything.
Definitely think my manual would be a decent book size.
I really appreciated what Jessica said at the end. I felt really comfortable using chronically ill for 7 years but a recent positive change in my health and an Instagram post sent me into an identity crisis and questioning of the last 7 years and how I fit into the community and if I was allowed in and I've just felt really really bad since. So this means a lot to me, thank you.
I've been living with fibromyalgia and cfs for about 4 yrs which has limited my mobility. I didn't consider calling myself disabled because my illness is not "visible". I also realize that I should use a walking cane but I afraid that doing so would mean that my life has changed forever.
Fellow cfs person here-had some similar feelings about aids/asking for accommodations, but I eventually came to the conclusion that, if I tried it and it would help, things already had changed. Like, the only difference was me noticing.
My dear lady, if I were not almost 3 times older and of the "other gender" as well as already married I would likely become another of the people pestering you for your attention and trying to find a place to live near by.
You are a joy to watch and I love how your mind works.
Thank you for these videos, they really brighten my days.
Clara left? ☹️ I’m sorry to hear that, I’m sure it’s hard to see her go.
She's gone back to Spain with her new wife. There are some lovely pictures on Jessica's Instagram 🙂
@@ElementalWhispers omg that’s awesome! Congratulations to the happy couple!
This is possibly the most beautiful speech I've heard in a long time. This quote deserves to be framed 💕.
"And, my darling, whatever you wish to call yourself, you go right ahead. Because words are actually just nonsense sounds that we've strung together in order to attempt communication and none of it is perfect and it's a complete hodge-podge. Whatever makes you happy, whatever you want to think of yourself as, whatever words make you feel relieved to have them applied to you, I want you to go right ahead and OWN IT. Yes, words are helpful in finding your community. Yes, it's delightful to know others with the same label attached to them. But when it comes down to it, when it really matters, we're all just mushy little creatures, bobbing along, trying to make connections with others and be loved for who we are. So you do you. You do absolutely fabulous you." - Jessica Kellgren-Fozard
Wow I really needed that sigh, would 100% recommend.
This video made me nearly as emotional as the one you made about being "disabled enough". After watching it I claimed my title of being disabled and vowed to get a diagnosis no matter what it took! I'm happy to report that I have a doctor now that found the neck injury others had missed for 20 years!!! Thank you so much for raising awareness, because of you I'm finally getting the help I need ❤️
EDS is considerate as a chronic illness in france and as a disability in some regions but not all. I use both labels, to me disabled is an umbrella and chronic illness an other and they both intersect.
As a type 1 diabetes, formerly scoliosis, and thyroid cancer, and a fellow redhead who loves fashion, I’m so happy I stumbled upon your good energy! I feel so heard! Sending love 💘
I’ve never said, “I’m disabled.” If I need to explain my income or my living situation, I will disclose that “I’m on Disability.” Because it feels like something I have, not who I am.
I appreciate you a lot because some individuals with chronic illness are dismissed and told "you're not disabled, you're not ill, you could be so much worse" blah blah. I got hit by a car when I was 16 and that's when everything started rolling in motion. I kind of never got better. Hypermobile Ehlers-Danlos Syndryome is so commonly misused. I was told that I am "loosy-goosy" but I had inflammation, memory impairment, chronic hunger pain, intense stomach pain, nerve pain EVERYWHERE. COUGHING hurts.
I'm tired of being unheard, you make me feel heard. Thank you Jess.
I strongly believe I have EDS but I had this relisation in feb and was about to go to my doctor (who admits my body is 'weird') and my disabled mother who I care for also fits the symptons but of course covid! so planing on writng a letter (essay) to actual doctor who is also my mothers doctor for his eyes coz at the moment the remote surgery can't garantee who you speak to. Great timing. Unitl I can get this seen to I have to point to single symptons (bad knee, hip, back appalling IBS, constant back ground pain etc) so just a moaning poorly middle aged women. Labels legitimise you
Thank you so much, this video along with "You're not useless" and "I was misdiagnosed" helped me a lot in accepting myself. I only have a chronically low B12 and most doctors say it's high enough, I had to go to private healthcare too to get acknowledged that "enough B12 to survive" isn't enough to thrive. The low B12 isn't enough to be chronically ill, not enough to be disabled but I can't do the same things other people my age do. Thank you for speaking about this grey area!
That moment when you have scoliosis...and extreme chronic pain...and four mental illnesses...and blindness...I'm a mess, aren't I?
Tell me about it
Another wonderful video!
Your videos always cheer me up and it's great to be able to learn more about other sides of the chronically I'll and disabled communities where I don't fit.
Most of the time I say I'm a spoonie as it gets long and complicated otherwise. 😉 But if I have to get into the details, I'm cronically ill and disabled like you. I have more than ten different conditions (including ME), and most of them stem from my autoimmunity which was always there but went rogue in my early teens.
I just tell people I'll never be well, I will never be healthy, but I am still doing all the things I can do
"If my body is this complicated, why didn't it come with a manual?!"
Me, but with my brain with all of its issues *sighs*
Also me with my ovaries, PCOS is weird as hell
Jessica, you are like the most beautiful soul to ever walk the earth. You brilliant human being.