Thanks for talking about this. As a disabled person since childhood also, I've had similar struggles. You're giving a voice to many who are voiceless. Thanks!
I'm not at that part of the video yet so I don't know what the CW is about, but thank you for including time stamps! I don't understand the use of CW without timestamps.. so thank you :)
You're beautiful regardless how you feel and it doesn't matter when you showered last. In retrospect I'd rather be skinny than fat. ❤ You're amazing and don't let people disrespect you
I WILL TELL YOU LIKE IT IS lol... how shall I put this...you do have the body sure of a person with a disability, but either way you look pretty, you look really pretty and I mean it, and it is fine to look like a person with a disability when you notice you do, and guess what... and that's ok even. It's perfectly fine. What else more can I say... I'm not great with words? You don't need to look like everyone else. There is no need to be bothered by looking different. If you have the energy to scream... sometimes you need to just scream..... try to entertain yourself if you find something to watch.. when not feeling as well, like a bad day... I have good and bad days of how I am doing... I watch cartoons... I was born with many disabilities and am strapped in a wheelchair etc. strapped down for every damn thing with in reason... I have seen pages and pages of tiny print of my conditions which ends with a and more + as if to say they do not know everything. I have been strapped down in many things beyond the wheelchair positioning straps. I have had it to the point someone is holding my head and putting the toothbrush in my mouth and brushing my teeth even, or putting their finger up my butt , wearing gloves, and making me go poo... meanwhile I am out of it to the pint I am not responding to anyone much if at all they just come and do whatever they need to do. Their were days when someone told me I am inspiring and I wanted to run them over with my wheelchair and scream at them making all the noise in the world to scare them off. HOW DOES THIS PERSON.... HOW DO YOU DO SO MANY VIDEOS??!! I was thinking to myself how in the world does this person do so many videos. If you tell me you think I look nice ok fine sure ok... but if you can tell me and mean it I look sexy and your not into wheelchair for some odd reason or whatever odd kink, that would be nice. For me it is not so much how I look to me it is when I am told by some rude person that basically they do not like the way I look.
In my case, every single joint hurts too much to even try to squeeze a freaking lemon. Just holding the lemon could be painful. We'll just call them centerpieces.
I'm a 69 year old woman with EDS. After church on Easter, a man stopped me to ask if I was from Texas, because he said I had a "Texas Swagger", which he found appealing. I was walking with a cane and had braces on my knees, and was suffering from a number of subluxations. I was using my upper body to move myself forward, as my lower back couldn't do it. Still, it was nice to get a compliment of any sort.
Jessica, thank you for making this video. The number of times I've been having a flare and I say something like "Ugh, I hate my body, it's like it's always malfunctioning" only to be met with "No, don't say that, you're beautiful." Like, I didn't say I wasn't, but I am in terrible pain, so let me be mad about that in peace.
This! I got so sick in a long term flare over the last year that I lost a full third of my body weight - and all anyone says to me anymore is "wow you look great!" Thanks, I hate it. That is the absolute least of my priorities when I couldn't eat, can't sleep, and lose my lunch every time I get into a moving car. Love being completely out of control of my body, and for your information sir I actually liked my curves but I'm so glad YOU think I look better now.
This - I'm in constant pain because of sciatica and a wee curved back etc etc and I'm also overweight. God forbid I get frustrated with my sore bits or my exhaustion related to them. Or call myself fat (which I am). I really hate it when I get told 'oh but you're hot/sexy/beautiful' and I'm like 'you know the two aren't mutually exclusive and I can be frustrated at the pain I'm in? I also get the 'oh but if you just lost weight...' sure but I eat healthily (relatively) I am just not terribly active. How do you propose I lose weight? Starve? Suuuure
@@danitini14 Ah yes. My response to some people about "how did you lose so much weight?" was "Well, you get dysentery and then have diarrhea every single day for three months and fail to absorb nutrition. So now I've got intestinal issues I'll deal with the rest of my life. Don't recommend!" Fake big smile. Wry. I'm with everyone on the "just let be be mad at my body for a bit" because 'why won't you *just* work' is a nearly daily mantra with me (and it sounds like a lot of us).
@@TheEileen i did something similar. I went from a size 12 to a size 4 in two months as a teen. People would be like "omg, your so lucky, I wish I could do that" and I'd go "Yeah, because remembering something deeply traumatic that you've repressed for years that sends you into depression so bad you literally don't care if you die and it straight up kills your appetite is so easy. Really, it's amazing everyone doesn't do it."
I’m a trans woman but I’ve never found another trans person who can describe the way I feel about my body better than you do when you talk about chronic illness. Online trans discourse is so hyperfocused on keeping the community positive as it fights for survival that I feel like this perspective isn’t really welcome. I’m just grateful to have something, somewhere that I can relate to, even if it wasn’t made by someone in my exact situation.
Sorry if this is out of place, but I have found the personal stories of trans people around me make me feel seen. though that feels like the wrong word. I guess the trans community and the disability community have a surprising amount in common. Like a lot about how my trans friends describe feeling about the medical community makes me feel like they understand me. Sometimes we have ways to help each other. Like when they recommended a version of a medication that did the same thing as one I was taking, but that did not make me want to barf whenever I had solid food. I brought it up with my GP, and their response was "well we could try that". I was screaming on the inside because I had been telling him about this for 4 years! Thankfully I can try and return the kindness by helping them navigate what little legal protections they have whenever work, their insurance, or society in general is being terrible. I guess that MBA was good for something after all haha.
As a transmasc nb with multiple invisible disabilities married to a transfem with invisible and very visible disabilities and living with another disabled nb I can fully vouch for just how much overlap there is in the experiences of disabled and trans people. Oh you never felt at home in your body because it didn’t line up with your internal sense of gender but your feelings were dismissed throughout your childhood and adolescence? I know that feeling because I never felt at home in my body because it was constantly causing me issues that were dismissed throughout my childhood and adolescence! And we both have to constantly remind ourselves that we’re not insane for wanting our bodies to feel more the way we know they should while we struggle with medical systems that are outrageous! Do you know a good endocrinologist in (insert city)?
When you said “I can’t be my body’s enemy” that really rang something in me. For a while now, I’ve been struggling with the feeling that I’m fighting my body, that it is in some way *my* enemy. I keep trying to take care of it, and it keeps making that as miserable as possible. I don’t think I can be positive about that, outside of making jokes, but I would like to strive for at least neutrality… Also, thank you for including the content warning! I hope your lungs get sorted out right quick ❤❤❤
Anger is a stage of acceptance. My body has new random symptoms every day, and none of them go away, they just pile up. I'm usually annoyed with my body for this stress (ironically stress causes most my issues), but once I go through that, being angry only gets you that far. Eventually you accept it and just move forward. My sentence of grief is "so this is my new normal now". I often ask my physical therapist when a new thing happens "is this normal or just a me thing" because I have no idea what a body is supposed to feel like.
One of the metaphors that really resonated with me is that we need to have a relationship with our bodies like a parent has with their baby. Sometimes babies are easy to like, they communicate their needs clearly and stop complaining when those needs are met, and being a parent to them is easier. During those times, the parent can live a life outside of parenthood, maybe go to a cafe or watch TV while baby sleeps. Other times, and for some babies it is most of the time, they cry and make messes and do all manner of things that mean the parent can't do anything else except attend to their needs. And it's very hard to like the baby, and a lot of parents feel resentful and trapped by their child in those circumstances. This can, in extreme cases, lead to children who are neglected and abused. And in less extreme cases, it leads to kids who have internalised the idea that they ruined their parents' lives. It's ok to not like your children all the time, it's ok to sometimes feel angry with them. But it's not ok to not love them. It's not ok to put them in a position of ruining your life, because we know that will have an enormous adverse effect on the child. Similarly, some bodies are easier to like than others, and let their owners do whatever they want, whenever they want to, most of the time. Other bodies aren't able to do those things and need much more looking after. The owner of that kind of body has every right to get angry with it, to find it frustrating. But to lose sight of the central love leads to people neglecting their bodies (by ignoring signals because they are inconvenient) and abusing their bodies (rates of deliberate self harm are higher in people with chronic illnesses). And in other ways, making your own body the villain in your story can only lead to negative psychological outcomes. Babies and bodies are hard, and some are harder than others. But they fundamentally need love.
Chronic pain person here too. I've been on about this so much to everyone around me - I don't need to get a pat on the back for "oh but you don't look sick". I need people to tell me "I see you are in pain, and if I can help you, please let me know". People need to stop saying "oh that sucks" and "sorry you feel this way" and start asking questions, start reading and understanding, and empathising.
"I see you are in pain, and if I can help you, please let me know". Thank you for this sentence. I usually respond with the other stuff because that's actually what I was feeling but didn't know how else to express it. I want to help but just wasn't sure of the right words.
@@gwynnmccallan8856 The best thing you can do is be as detailed as possible, express details you notice, changes in the person in pain ( "I notice you get tired more today than usual. Would you like to sit down?"). That makes a person feel like you have paid attention and care. Absolutely avoid clichee phrases like "sorry to hear that" or, God forbid, never say "that sucks". Those are extremely invalidating and can also be seen as "yeah I don't care, deal with your own issues, bye". And I don't think that's what you want to come off as, but those phrases can be understood that way. And nobody wants to be around people who invalidate their pain. For peopel with chronic health problems, we already have to deal with tens of doctors who invalidate us on the regular, least you can do is not be one of them.
Absolutely agree. I cannot stand being told that I don’t look sick; I know it’s usually (usually) meant to be a compliment, but it just feels so invalidating. I love the phrases you suggest.
EDS flare over here lol And the worst of my joint pain is in my chest (because it turns out there’s joints there lol) so I can’t even complain about it without people getting excessively worried lol
I have a disability, not obvious to the general public, but it requires me to adapt, be creative and even have a touch of Sherlock Holmes in sleuthing my way through life. Until this video I had not thought of those skills as relevant or important. Thank you Jessica for helping me to appreciate my skillset.
I LOVE this comment!!! WWD [Women With Disability] ARE skilled because we have to be. Also, acknowledgement if this, ie really seeing this, is so important..
I can really relate to the feelings of toxic positivity. When i was a teenger, I hated the way my body looked, and went on a mission to learn to love my body, appreciate it, practically tell myself off everytime I felt remotely negative about it. The past few years, i started to experience pain all over, and pushed myself to be positive through it all, to the point where I ignored what was actually going on, until I was diagnosed with fibromylagia. The pain had become unbearable by this point, I had to quit my job because of it, have avoided relationships etc. Suddenly I felt as if I had failed, because I had how my body made me feel. All the therapeutic advice was to appreciate my body, how 'strong' it was, and that if I think negatively the pain will be worse and I will be causing it, in a way. Today I've had a horrendous flare up, left work early and am currently in bed, psyching myself up (for the past 3 hours) to go and get a glass of water - I hate my body right now. Not all the time, but right now, it sucks. I'm not a failure for hating my body, it's just how I feel right now, and given the amount of pain I'm in I'd say those feelings are valid. It's not all bad, but it certainly isn't all good - something I'm still trying to accept.
If you're concerned about a friend's plummeting body weight, by all means, ask after them. But don't open with "You look like trash, mate." Try asking if they're okay. That's a good place to start.
I’m currently reading a book about reclaiming body trust. This vlog tied into it nicely. I remember my mother telling me I wasn’t really sick when I felt horrible. I also recall doctors telling me my anxiety wasn’t real or that it was all in my head. Um, excuse me?! I think there’s a low level of body distrust in a lot of women as we’ve been taught by society to distrust our bodies.
I always respond to the 'its in your head' with. Yes, that is where my brain is. After all anxiety and depression are mental illnesses. It's all my brains doing
My mother: "Migraines are psycho-somatic." Me: My head is killing me. My mother: "I just told you that your headache is psycho-somatic. That means it doesn't hurt anymore. I told you it doesn't hurt any more." Me: But ... My mom: Nope, I told you, it doesn't hurt any more. Cue 20 years of therapy 20 years later to figure out how to stop ignoring/hiding everything wrong with me from my own damn self.
Yes to everything you said. I cannot walk or eat but “at least you look good.” This makes me furious. It minimizes my pain and illness. I don’t want to linger or wallow in my illness but at least acknowledge that it sucks bad and this isn’t fun.
I love your outlook. Neutrality is fine. It is what it is! As long as I’m not at war with myself, I’m ok. I hope you feel better very soon! Sending you healing thoughts and wishes ❤
It is so freeing to hear a fellow disabled woman talking about the times where our bodies act up in a way that isn't pleasent or comfortable without society's need to sugarcoat it and tell us we are strong or inspiring for living with our own bodies in a day-to-day life, really appreciate it, thank you so much ❤❤
It’s easy to love when you only love the good bits, the functional bits of yourself. I have struggled with my brain bits all my life. My mom has struggled with her body bits all her life. Now, here we are, she is 83 today (yes, today 🎉, she never imagined she would reach this age, I did, cuz she’s stubborn and strong), I take care of her full time. We help eachother with our bits. Every day is a struggle, some days you win, some you don’t. Trying to love all our bits, despite all the frustration and hurt. ❤
Body disconnect being fostered at an early age by adults is a big cause of worsened disability when one grows up IMO. This video is important Jessica, thank you for this one.
1:08 "when life gives you lemons but you've got a chronic illness so you're too tired to do anything with them." I wish I had the energy to stitch that on a pillow I can hold for comfort when Im feeling upset about the things I want to get done and need to get done but don't have it in me to do.
I appreciate that you give yourself permission to be lower energy when you’re feeling especially unwell. I think when creators have a very specific way they present themselves most of the time (like your usual very smiley and upbeat manner) they can be afraid to let their viewers see them any other way. Letting us see you on your lower energy days, where you speak softer and lower because easier and more comfortable when you’re unwell is just really nice. Like it’s a great reminder that that the people we follow online are humans who go through stuff, which can get forgotten sometimes. I appreciate your vulnerability and transparency and hope you’re feeling better soon. ❤️
I understand I'm on a permanent feeding tube, RA and spinal disease my back is currently out. I also have a auto immune disease as per the permanent feeding tube. I take care of my dad with cancer. Lost my mom in 2021 my husband Jan 2023... all I got to say us enjoy every moment you guys have together. It's ok to have bad days. I allow myself to have that. When your so tired you can't even move your head silent tears it's ok to just be. I love you girls. You're amazing mom's.
I hope to find the right words... but your comment really brought home how strong we as humans are. Even in the face of struggles like yours we try our best (and what works is enough) to help and to live life. I wish you many days of joy in your future and that things can get a bit easier. Best regards, Larissa
I have CFS/ME and I wash my hair no more than once a week pretty much always, and I don’t mind that part, but I do find it important to vent about my limitations, for sure! 💛 Sometimes it is discouraging to have fatigue and all the other symptoms, and I wish so much I were healthy and normal. You grieve what could’ve been...don’t you? I’m sorry you were invalidated so much as a child. ☹
Fellow ME/CFS sufferer here, been thirty odd years so pretty much done my grieving but strange you should mention it. I have a friend who has been fit and strong and very hard working and active his whole life but recently his body has let him down. He's had strokes and heart problems and of course he can't just get up and fix stuff and do big gardening jobs any more and it's completely stressing him out to the point that he's been offered counselling. Only this morning I explained to him having been in that same place when I became ill, that the loss of your physicality and sharp mental faculty is like a bereavement and we have to respect it as such to process it. I'm hoping I'm on the way up from a relapse after getting the awful cold doing the rounds, it's knocked me back worse than COVID, how's that for weird?! Wishing you more good days than bad...ooh...have you taken part in the DecodeME trial thingy? If not do look it up, there's a website or it's all over Facebook or TH-cam. They're doing genetic testing to try to find the cause and they're still asking for more folk to take part. It's a questionnaire, then if you meet the criteria they send you a "spit kit" to collect your DNA anonymously to try to find some commonality. By the way it's set up especially for our condition, geared to work online so you can pause and come back to it later and questions are simple and clear so as not to fry your brain! Sorry I'm trying to give as much info as I can but I expect you already know all about it...I'm assuming you're in Britain of course as it's not open to those abroad....let me know if you need to know more. 👍😏
There are times when I do not like my body at all. I'm sick of pain,. I'm sick of frustration of not knowing whether I will be able to do things or not. It's not a body that's ever looked particularly nice either. When my body is failing, and I'm so sick of it, I think to myself. These are the arms that hug the ones I love. These are the eyes I use to look at this wonderful world. These are the ears that listen to stories of joy and of sadness. These are the feet that take me places (most of the time). These are the hands that make food, and crafty things. This is the brain that allows all of this to happen. The kidneys aren't too bad either. But, it's me. It helps me to think about the things I CAN do, even when my body is failing to do some of the basics. I don't know if it is because there's an illusion of control, but it helps. :)
I am currently on day 3 of my most current fibromyalgia flare. Barely able to move or even go to the bathroom. Once again reminded through severe pain that it is possible to feel pain everywhere all at once. Between the fibro, migraines, hernia, osteoarthritis, allergies, asthma and numerous other medical conditions/issues, it honestly feels like my body hates me. So I feel you. Worse part? My bathroom is on a separate floor….. 😭😭😭 Point is, I live for your videos. I hate that you’re in pain and suffering permanent and serious health issues as well (would never wish that on anyone), but at the same time, your videos help me remember that I am not alone in the world and that there are others who understand, feel the same and care. Thank you for giving voice to all of us!!!! Love you!!! And hope you feel better soon and that your wife and son are well!
Bathroom on another floor is just ultimate torture when you are in body pain. I have arthritis too all over and it sucks. I live in a one floor apartment luckily but some days just standing up is brutal. Meantime my family think I’m ok to fly across the country to attend a family reunion. I said no and am feeling guilty even tho I know I’m better off staying home. It sucks to have chronic illness.
@@fragilefleur I too have been made to feel guilty about literally not being able to walk or eat and attend family events. I eventually stopped most communication with those family members. I struggle most days and do not need the added guilt.
Thank you for saying these words, I needed to hear them today. I am trapped in bed with blinding pain from Systemic Lupus and this was a reminder that it doesn't always feel like this. I emailed this video to my sister as well because I was trying to explain this exact thing to her-- the fact that I can both love and hate my own body because at the end of the day it is my body and it is the only one that I can ever have so I have made my peace with that. Sending you all of the healing prayers and a totally not creepy internet hug.
My first experience of chronic pain was as a teen being told my body aches were growing pains - despite not having grown in years. It’s weird when people tell you something is “normal” when it’s definitely not normal.
Oh I can relate to this. My knee and back pain was attributed to "growing", but I wasn't growing anymore (13-14 y/o). Turns out I would have needed surgery when I was like 6, but it was too late because I was grown. Thanks, crappy family doctor 🙄
I was told by my doctor that what was clearly my joints not coping with an increase in sports training (eventually diagnosed as EDS, 13 years later) was "just stress" so I put up with the pain through years of full-time training instead.
I remember this happening to me too, my mom told me I just have "walk more" for it to be okay, but that clearly didnt work. She takes me serious now, but it's years too late for it to make a difference
"Is my body a part of me" Felt that one! As a disabled person with chronic pain and also gender identity questions, this hit really true. Hope you don't have a lung infection (again) and start feeling better soon
I got covid for the 3rd time ( I'm full vexed but am immune compromised.) Feeling like hot garbage seems to be my default. I try to be body neutral, as there is to much that causes me pain to be positive about. My health issues are rather tangled as my disabilities are from child abuse. So it is a tangled web of rage that I often deal with.
"We tell people that their flaws are beautiful as a way of telling them that their flaws are irrelevant." I have always had these thought about 'complimenting/a positivity movement as a method of deflection' but i've _never_ been able to describe them as powerfully and succinctly as this. Thank you Jessica - this really resonated with me.
Honestly body positivity is so hard for me because my chronic illness is a major factor in why I gained weight and also a major factor in why it took so long to be diagnosed (we love doctors just saying stop being fat it will cure fibromyalgia). It's a really tough thing to handle seeing active and honestly debilitating body discrimination being essentially belittled largely by thin able bodied people saying hey I have a stretch mark so we're all the same it's all good!
I love how Jess brings out how it’s not necessarily to “love” the things that hurt you even if you were physically born with them. My disability isn’t beautiful to me, it’s painful. I don’t love it.
I am so ill right now. I’ve been I’ll for years and no one listened. No one believed me. Then my health just exploded and then I got Covid and that made everything even worse. Your videos get me through. They validate me in a world that makes me feel like the most invalid person who ever existed. Thank you ❤
You are amazing. As someone with multiple invisible illnesses that impact every aspect of my life, I'm so grateful to see myself represented. Your soul is beautiful and your work for the community cannot be extolled enough. Thank you for your transparency and sincerity when discussing your reality.
I feel really disconnected from my body right now, like it's this thing external to me that betrays me. Your words were so helpful! And I'm impressed by your ability to show such vulnarability, and to show it's okay to not be okay sometimes.
TW self harm. I've got a chronic, unending condition that causes a permanent migraine. Makes it difficult to form new memories, colours disappear beyond about 2-ish meters and on a good day is just "severe." Over the last 15 years, I've tried to end my life 3 times (last time was almost 9 years ago now) because I hate this broken, defective body. Externally, I'm in great shape. I meditate to manage the pain, I make compulsive notes to remember things and I get lots of fitness. People say "you don't need to hate your body, because [insert well meaning complement]" but I have no reason to like this agonising, corporeal form I'm stuck in. Anyone who reads this, please leave a supportive comment telling me how much you think my almost 40 year old body absolutely sucks ❤️
NGL that does sound like a living Hell. I would have chronic migraines if I didn’t almost daily take Advil. Migraines when they happen nonetheless are super disabling for me
Thank you for saying the things people don’t need to say!!! My daughter has hypotonia, an ASD, hydronephrosis, and other things we are looking into due to a genetic issue. I can’t stand people saying some of those things. You don’t need to feel sorry for us and about all the doctor appointments. This is life and it’s different than yours (person making the comment), but we don’t want/need your pity. We’re happy. My daughter is happy!
I'm working very hard on letting myself feel the bad days and not push myself through them unnecessarily. Had my first appt with a new doctor today and felt heard for the first time in a long time.
Please do a video on when people accuse you of using your disability as an excuse or crutch to be lazy. Are they gaslighting me or am I guilty of learned helplessness? I've researched and tried different health treatments for years, but my mom still doesn't understand.
I have limited energy throughout the day. And the more things I do, the less energy I have. Considering I'm not the only disabled person in this house, I need energy for emergency situations in case they come around. So it's a question of what I can do, what I should do, and what would be a stupid idea to do. What's a dumb idea to do: walk up and down the stairs multiple times a day. Yes it's exercise and exercise is good for me. But if I do it too much, that means no energy to function for the entire day. I need to have energy to do certain things during the day and I need to not exhaust myself for the week. Going grocery shopping means I often sleep for two days if not longer. I'm still recovering from Easter Dinner. That's not learned helplessness. I'm tired. I'm physically tired. That's not even factoring in how tired my symptoms make me. Which is exhausted. Everything takes energy. Living takes energy! I'm not about to give up living. I'm just constantly evaluating what I can and need to do. If it can get done later, then it's getting done later when I have energy to spare. Running on empty means expensive medicines to take and treatments I have to sit through. I can't always get appointments for those and it's a waste to appease a single person with those. Again, that's expensive. My energy equals time and money and if it's not worth expending my energy for time and money then it's not getting done.
I’m not completely sure, but I think there might be a video on the topic already. Maybe try searching for Jessica’s name and the word lazy? I vaguely remember watching something along those lines. Or check the chronic illness playlist?
I'm so sorry this is the case for you. Just remember that it'll be you who has the responsibility takes care of yourself for the rest of your life, even if you want the support of others. My experience is the best way to get that support is to find what you need, learn to articulate it regardless of whether it's accepted, explain when needed, and then accept nothing less, whether it's you that provides it for yourself, or others. It took about 4 years for my mother to accept that a milk allergy that exasterbates and triggers blacking out, fatigue and multiple other symptoms wasn't just in my head. She even tried to 'sneak' dairy into my meals so she could prove it to me. When I started making my own meals without in a separate environment many things improved. Find what you need and make it happen.
I am luck in that I have your standard aches and pains for my age and profession. However, my sister and my Mom are in chronic pain. My Mom's condition will continue to deteriorate and she is not pleased with her body. I am going to have her watch this video. My sister is in the middle of a flare and is so frustrated that she can't do what she was able to do just 2 months ago. Watching your videos helps me to understand more what my Mom and sister are going through. Thank you for sharing even when it must be so very difficult.
I finally got my Botox treatment done yesterday. It’s a 4hour round trip to get to my doctors office. It was almost a month late and it takes a week for it to take effect. I’d like to be able to get a new body. I have chronic intractable migraines, but the Botox turns my pain level down by a significant amount. I’m fighting with my insurance company for a wheelchair to use to get around my house😢because I also have multiple sclerosis and crippling fatigue. I occasionally just fall down. We do what we can.
I’m replying to myself but I also have intractable nausea, that we only discovered because I was telling a fellow migraine sufferer some of my tips to get food down when you can’t. Gastroparisis I have been told might also be a problem.
My empathy seems to be unexpressed in a normal way, being autistic myself makes me think that telling you about the situation with me is a way to express my sympathy and empathy. I understand where you are coming from, but that’s impossible so I’m telling you where I am coming from hopefully we can meet up in the space where our experiences overlap? I’m feeling terrible today and I wanted to share my little quiet place with folks.
I really relate to this video. My issues being mental health and being trans. When it comes to body positivity it feels like there is the belief that the only way to defeat transphobia is to always love your trans body. But the truth is... it's a complicated relationship and it always will be. Hormone therapy has certainly helped alot, but it's always going to be a complicated and messy relationship.
I know these videos are probably very taxing and challenging to make. Thank you. Seeing the hard days is so helpful to understanding the challenges that other people face.
Watching this on a day where constant cluster headaches once again fucked up my attempt at a workout schedule just feels cathartic. I hope things will get better for you asap
having had splitting headaches the last week because of high air pressure (not quite on the same level as my migraines but still annoying and debilitating) I get you about hating the malfunctioning body. also the amount of times people say "but you look so attractive" when I explain my medical issues. As if me getting 10+ dislocations per day would somehow be less of a struggle just from being pretty.
I'm 61 with cerebral palsy among the list of many illnesses I have... I love how you cut throught the malarkey and speak your truth is elegant ways. I wish to be as elegant as you are when expressing myself.
That brave, chirpy and sometimes snarky front you present for the reasons you alluded to would get in the way of the message for me. This entry was raw, honest, pure and very relatable, even for one without an invisible illness.
I love how Jessica addressed that everyone feels different about their disabilities, bodies, etc... It's so common that people within the community say "disabled/colored/LGBTQ+ lives are x, don't do y", but in reality, I see the next person over and they actually really appreciate it when someone does "y" and feel validated in different ways.
"I can't be my body's enemy" resonated DEEP today. I am in the throes of a flare and find myself feeling guilty about the pain. WHY?! Pain is not something I can defeat, but it is something I can learn to work with.
Body positivity can be helpful but can also feel pretty toxic if you’re not doing so well. I had an accident a few years ago which left me living with an amputation that involves having skin grafts that occasionally break down so I can’t wear my prosthetic leg until it heals. Because my circulation in that leg was compromised it heals ridiculously slowly. Today was the first day in 21 days I’ve been able to walk at all and while it was great it also hurt quite a lot. I have so much empathy for you being frustrated in your own body because I have spent three weeks cursing mine. It makes me nuts when I hear things like “but you get so much done from your chair it’s amazing” then they follow it up with my least favourite phrase in the universe “you’re so inspirational” 🤬🤬🤬🤬🤬
Your personality is literally so lovely. You are a genuinely caring and supportive person. I am so thankful for your videos, especially the ones about chronic illness. Your videos make my day brighter and have taught me so much.
Your videos bring me so much comfort Jessica, I have ME/CFS & hEDS, I’m an ambulatory wheelchair user because you helped me accept I need it… your honesty and rawness brings me comfort every day, so thank you
This is reminding me of a discussion with my therapist about sadness/depression and happiness/mania and how being happy/feeling positive and feeling forced to feel that way can sometimes be as bad or at least unhelpful as the sad/depressed side of things. I had been at the time been talking about mental health depression at the time, but I have found it a helpful way to think about my ankles when they decide to complain or other things than just depression. It's ok to not be positive all the time. In someways if you're positive all the time about certain things it can almost be a problem in itself...
Thank you for sharing! I'm in a bad flair currently. Feeling like a useless waste of space. I have chronic pain, & chronic fatigue, and right now my fibromyalagia and gastroparesis is in a flair. To many couch days lately. Trying to get to a place of neutrality with my feelings about my body. Hope you feel better soon. (Well, as better as you can.)
I have recently been diagnosed with EDS and it brought me a great deal of answers about my body. I struggled a lot with my relationship to my body since my childhood thanks to unexplainable ilnesses and allergic reactions and all that stuff. Now, I view my body as that lab partner I didn't chose to work with but we ultimately have the same goal so me make it do and are cordial to each other.
Jessica you are the most articulate person I have listened to, when it comes to explaining how you feel about your body and illness. Your thoughts allow others to feel comfort in how they are feeling, and the pain they are suffering. Currently wish I could have a day where I don’t feel like crap. Hope the flu leaves your and Claudia’s body ❤❤
Oh, the timing... I'm just getting over a bad bout of the flu-- which yes, always kinda sucks--but I have Adrenal Insufficiency and Hypothyroidism, which means my immune system 'called in sick' (😉 😅), and it hung on for what felt like *forever*... Add to that some LOVELY menopause issues, and I'm kinda ready to just give up on this old body, trade it in... Trying to keep a positive outlook--a *healthy* positive outlook--when it feels like our bodies are betraying us--yeah, that's a tough one. THANK YOU for sharing with us; it helps. ❤
I have RA and fibromyalgia. I just had surgery on my left foot and next month I'm having surgery on my right foot and then (hopefully this summer) I can get my left knee totally replaced and then I don't know, maybe next year maybe my right knee. I had so many aspirations for my life that my body just won't accommodate. So I'm just trying to say that this is sadly relatable and I'm sorry that you're feeling so shitty.
14:29 I had a failed epidural when I had my youngest who is now 16. The second time he went in to do another attempt, he broke the dura and then said, "Oh well, now you're going to have a spinal headache." He said it with authority while I was in labor and my brain was like OK I guess that's what we're gonna do. I got a blood patch done the next day from a different anesthesiologist who I wanted to marry after he did that because it immediately makes a headache go away (if your body works correctly.) And thankfully mine did cooperate with that. But I got electricity shooting up my spine in spasms often on for years after that.
This video frankly gives me so much comfort as the last few months of my life have been hindered in very similar ways. With out a diagnosis my disability has pretty much ruined my life the last couple years. (though mine are often the same symptoms Jessica lists so she set me on a diagnosis path with information I can use to speak to my doctors on!) Add in pregnancy and diabetes my family encountered homelessness due to how hard things like flu and covid can effect my body. It's felt impossible to love anything about my body.
Hi Jessica, no sorry for what you are going through. I can another way to show solidarity, my bones, teeth, connective tissue and some genes are haywire, oh joy! My tmj, and most of my other joints are getting worn away for autoimmune reasons, argh. I struggle to eat toast of all things. I love you so much for showing how autoimmune disorders actually affects people like us, my super hubby and your Cloudfoz are our pillars lives. Feel free to reach out to me if you ever feel up to it. Xx
Thank you so much for making this video. I don't hate my body today, but I hated it yesterday! And I'm sitting in bed feeling ill wondering "how am I supposed to love this?" Society, strangers, and even loved ones have difficulty understanding, and I often feel pressured to love myself. Thank you for giving me permission to just be sick and grumpy. Really, thank you
💛Sending you much love and I can relate to this as an autistic, chronic fatigue and mental health stuff going on through my life. Btw I also have discovered the Sims and twitch recently xx
Okay but as a fellow EDS spoonie who DID spend all day in bed yesterday due to a migraine - you ARE amazing for getting out of bed today! Any day we manage to get out of bed is a win. (Though notably, not being able to get out of bed isn’t a loss…it just…is.) Thanks for talking about this subject. You had a lot of great thoughts, and I appreciate that you used the spoons to articulate them ❤
I suffer chronic migraines daily and am disabled by them. Due to many medications through years, my gastric lining is very sensitive and I get gastritis very frequently. It's very hard to love our bodies when we feel like they're failing us. Especially when something helps us with one condition but makes the other condition much worse
I can't tell you how validating it is to hear you articulate your experience. It so very mirrors my own. I still struggle with identifying what my symptoms actually ARE, or to articulate what they are, because I always felt the only option of trying to explain myself was within the framework of what I was told by people looking at me from the outside. I've been told over and over that my experiences are not possible, or that it's just something else, and years of explaining my symptoms as a description that will be accepted makes it hard to explain them as what they are. The first time I remember blacking out was in kindergarten sitting cross-legged in a school assembly, I had no context to understand what was happening, all I remembered was waking up flopped forward, my face on the ground, being bapped on the shoulder by a teacher who told me to "stop playing around." So... I thought I was playing around. I had been bad, I was bad. Food not staying down - I was just a needy child with a nervous stomach, prone to car sickness, given medication to keep it down. Tummy aches - clearly a child who wants to stay home from school - off to school I go. I got bloodwork, it came back normal. Not following along in class? I just needed to learn study and focusing skills with some extra help after school (definitely not losing my hearing). Shoulders popping out of their sockets while sweeping and choring? Thats not a thing. Vertigo and complaints of walking into walls was clearly just exaggeration - "you look fine, everyone has a bit of dizziness now and then." That continued on through high school. Blacking out in gym class while running, light headedness, running sideways, I was told to "stop tripping over my own feet." I got a C. Continued on through university - I was just overwhelmed by classes. I saw myself constantly through others people's responses - this is who I thought I was. It wasn't until my twenties away from home when I was in bed days at a time, shaking, unable to stand - or - when I did often blacking out and waking up in a morning's liquid breakfast that I convinced myself and those around me that it was not normal, I was not making it up, I was not exaggerating. And none of my symptoms were thanks to "enjoying my freshman years a little too hard" because there was none of that. 15 years of determined self care and slow improvement and it's still hard to feel valid, I look too healthy. I take my self-care seriously, but aside from my partner I don't try to explain it to others because history has shown me it's pointless unless I have a specific need. I'm still working to identify what some of my symptoms stem from. It's a slow road to knowledgeable care and I'm in a 1.5 year waiting list for the next specialist, a cardiologist with experience in dysautonomias - but at least with growing community and shared experiences like yours people like me can see we're not alone, and have an example of how to communicate our experiences.
Oh my gosh, I really needed this video today. I also have EDS. I was having a really bad physical day today, and I had to stay home from school, and I relate to the title a lot. I struggled with really similar things in middle school and highschool that you described about teachers and adults telling you that everything was normal, or nothing was wrong. I fell down and broke my leg because my EDS causes my bones to be very brittle, and my gym teacher told me to walk it off. In highschool I rolled my ankle and was told by doctors I was fine until six months later found out I had torn a ligament. I really related to this video and it really helped me fell less alone. So, thank you soo much. Love you Jessica ❤
I feel this. I have "loose joints" as a general diagnosis, and I genuinely think I have EDS. This week has been terrible. I'm a teacher and my shoulder fell out of place when I was writing so I just couldn't write anymore and I felt so embarrassed. I had to explain to my students how this lesson would have to be short because I just couldn't finish it out. I also keep tripping because my knees, hips, and ankles keep slipping and it causes severe pain. I feel this video so much.
I’ve never thought of it that way before, the comparison between the individual psychological, and social/systemic affects of body positivity but when you explain it it makes sense that they’re actually two separate issues/ discourses ways of thinking and while that doesn’t make them opposing it also means that they have their own specific components which should be examined individually rather than as a whole.
This feels sooo familiar too omgg, lots of strength sending to you from an other eds girl ❤ I want to show your first bit to everyone around me and ESPECIALLY doctors omg, reminds me also of all the comments "but you look so nice today how can you be in such pain like you say ?" oh yeah i look good today cause it's a good day otherwise i couldn't get out of bed :'D but i am also mad at my body lately so this is always refreshing to hear thank you
Or they ask how you can do so much one day bc you have a lucky good day and then you are down for a month. But they say that they think you can do more bc you did it when you could. I wish that were true.
I really appreciate this because I’ve never loved my body, I’ve loved parts of my body and had plenty of times where I hated the parts of my body that were deformed of hurting me or making me pass out in the middle of class and costing me hundreds of dollars beca someone called an ambulance and this is America. But as for my body as a whole I’ve never understood why I had to love it or why it had to be some amazing wonderful thing because it’s just a body and everyone has one and it felt strange to me that I had to be defined by my body when it was such a small part of who I am and most of what it’s contributed to how I view myself has been struggling with it
💙 Hang in there, I wish you more good days than bad! I have hEDS and am in a mast cell flare up atm so every joint injury I have and have had is like, hey I’m still here! POTS? Yeah, still here. I’m in my 30s so I understand the struggle with body image and expectations. We are often our own worst enemy.
Thank you so much for talking about this. Your early life experiences sound very similar to mine, I'd be told no it doesn't hurt that much or no it isn't that bad. I suffer migraine with aura and they started after open heart surgery when I was 6 years old. I have ME/CFS as a result of glandular fever when I was 17 too & I'm 31 now & still get people saying "well you look lovely/fine" etc & it still makes me want to scream. Same with the chronic pain I have. Body positivity can be great for some things, but not when it turns into toxic positivity thst doesn't allow you to express anything bad. I'm going to share this with so many people because yo make the point wonderfully & I'm glad I'm not alone. Thank you❤
Gosh this is so real! We were having a conversation about it with some friends just yesterday. It's really something that a lot of abled people cannot get their head around .
That thing where adults tell you something is normal or else not what you're experiencing! I am in the process of learning to listen to my body because I got so used to ignoring pain and discomfort until I had NO CHOICE to stop. From the outside, it'd look like I was going from fine to non-functional in an instant. Thank you for putting this into words so well. It's really validating.
Jessica's video topics always come up at the right times. I'm in my senior year at university, but due to physical and mental health issues I might not pass my classes. Sure I might get compliments from strangers daily for my appearance, but my ribs don't wanna work. Body positivity is more than one thing.
There is so much beauty in this vulnerability, thank you so much for sharing. I have MS and it's literally my body confused about everything so I feel being authentic in expressing how shitty I feel is best. It's a way I can reclaim my power over the constant pain and confusion, in my mind and body. Much love to you, wifey and bebe
Thank you as always, Jessica. I have the most grief regarding how my health has affected time and opportunities - as I get older the hourglass runs down quicker. Most grief comes from people passing away, and not being able to spend time with them or say goodbye. I've had ME/CFS and fibro since I was young, but it's a recent back and hip injury that's left me more frustrated with my body than I've ever been. I realize I was quite accepting of the rest in retrospect. Just being able to sit is now such a complicated thing - and I thought it was bad before with fibro! The injuries aren't permanent damage, thankfully, and it's just very very slow building up strength again due to CFS and fibro. In the meantime, more loved ones get sick and pass away. There are opportunities I can catch up on later, but not people's lives. Damn. Thank you for the opportunity to vent in the comments section!
You have so much humor about something I know you really find frustrating. I love you for your outlook and how you handle such bullcrap. I said bullcrap because I know you never swear.
I'm having such a hard day today with my dysautonomia because of the humidity, and it is so incredibly encouraging to listen to you and know I am not alone. I cannot help my friends and family understand when I say small things like that can change whether I'm able to even get out of bed or not as they don't have the same experiences, and I love having this community for that reason. Thank you for being you Jessica
Ive watched your videos for so long now. I just love how you are so real about disabilities! I live in constant horrific pain and some days I just want to scream at the world. Thank you for making me feel not so alone ❤❤❤❤
This! And with my mind. A little "you suck today but you're trying your best so can't be too mad"-attitude towards my body and mind works wonders. Or it doesn't and that's fine too.
Psychologically I separate my chronic conditions, even the autoimmune ones, from myself and my body. An example of this is when I have a flare, I mentally think of my body is doing its best to fight for me not that it's against me, it really helps my mental state. My body and my consciousness are basically a team fighting against all the internal and external things that are thrown at it. This doesn't mean that I don't get frustrated and I wish my body could do more, but I know that it's doing its best. Hopefully this way of thinking might help someone else.
I just want to say thank you. You address body positivity and chronic illness in such a brilliant way and how it can be so toxic. We are fully entitled to love ourselves, while also being frustrated with and outright hating our bodies. We are allowed to dislike that there is a disconnect between what we WANT to do, and what we CAN do. While I won't say the stereotype "but you look nice", I do want to compliment your original sense of style. While I agree that people shouldn't concentrate on the superficial, unfortunately it is also something some people don't have. I have (among other things) PCOS, and therefore originality and such compliments are something that as a plus size cyster who cannot afford well made plus size clothes, is highly unlikely for me to achieve. It is a rare day I get complimented on my appearance. I don't want to lesser the points you made because they are brilliant, however there are definitely those out there who never get to feel pretty at all.
19:13 i’m 19 years old and housebound because of my chronic illnesses, and i’ve noticeably been getting sicker for about 10 years, but even faster over the last 5ish. when i first started accepting that i was disabled and my body would never function optimally, i had this mindset of being happy about the things my body COULD do. it was okay, but it made it so much harder whenever i lost one of those things (favorite foods, activities, my long hair, etc). After a while, i decided to start just accepting my body as it is and as it changes, and that has helped me so much more. My disabilities are very dynamic, and this mindset reminds me to be equally kind to my body on days i can spend hours talking to friends and do my laundry and on days i can barely take all my meds on time and can barely get to the bathroom. Jessica, your videos have helped me so much over the last few years, as i was a fan of your fashion before i even knew we had some of the same health issues (hEDS, POTS, etc)! I truly don’t know how i would have gotten through my hardest times without people like you sharing your experiences and how you can live a happy life despite everything life throws at you :)
As a fat person with arthritis and hearing loss, I really resonated with this today. Thanks, Jessica, for putting words to these feelings, and speaking up when it is so clearly costing you. I hope your body feels much better soon.
Thank you for taking the time and energy to talk about the way that the beauty of the body is prioritized over all the other aspects of ourselves. We recognize your hard work and appreciate you for it. This isn't a topic covered by a lot of people. Thank you.
I can hear someone typing in the background and I love it. It created a calming atmosphere that really grounded me and allowed me to better focus on the topic.
Face nerve pain is the worst. It's the numbness that is getting to me lately... but fortunately, I am strong, and you are inspiring me to keep going when I just want to lay down and give up... I get it. I understand it completely. Migraine is horrible... I am glad that isn't too much anymore. It not being able to hold onto things and walk. Yesterday I was not able to get up or move my lower body for over an hour. I never experienced it before. So it scared me, and I just put my head down on the table and passed out. I am doing my best to maintain positive vibes and keep creating my artwork as best as I can.
Thank you. I'm going through a many month long chronic pain flare with a suprise flu mixed in and I have been in bed for the last week. I have a lot of trouble seeing my body in neutral light, let alone a positive one. This video is what I truely need to see right now. It lifts a few of the dark clouds I've been stuck in to know I'm not alone and it's ok to feel as I do.
![You're Not Useless [CC]](http://i.ytimg.com/vi/_2H7upHDIM4/mqdefault.jpg)
*Skip from **13:42** to **15:05** if you'd like to avoid the mentioned Content Warning*
2:08 I was told my whole life, having great teeth is so important for great beauty ☺️ and girl, you have an amazing smile!
Thanks for talking about this. As a disabled person since childhood also, I've had similar struggles. You're giving a voice to many who are voiceless. Thanks!
I'm not at that part of the video yet so I don't know what the CW is about, but thank you for including time stamps! I don't understand the use of CW without timestamps.. so thank you :)
You're beautiful regardless how you feel and it doesn't matter when you showered last. In retrospect I'd rather be skinny than fat. ❤ You're amazing and don't let people disrespect you
I WILL TELL YOU LIKE IT IS lol... how shall I put this...you do have the body sure of a person with a disability, but either way you look pretty, you look really pretty and I mean it, and it is fine to look like a person with a disability when you notice you do, and guess what... and that's ok even. It's perfectly fine. What else more can I say... I'm not great with words? You don't need to look like everyone else. There is no need to be bothered by looking different.
If you have the energy to scream... sometimes you need to just scream..... try to entertain yourself if you find something to watch.. when not feeling as well, like a bad day... I have good and bad days of how I am doing... I watch cartoons... I was born with many disabilities and am strapped in a wheelchair etc. strapped down for every damn thing with in reason... I have seen pages and pages of tiny print of my conditions which ends with a and more + as if to say they do not know everything. I have been strapped down in many things beyond the wheelchair positioning straps. I have had it to the point someone is holding my head and putting the toothbrush in my mouth and brushing my teeth even, or putting their finger up my butt , wearing gloves, and making me go poo... meanwhile I am out of it to the pint I am not responding to anyone much if at all they just come and do whatever they need to do. Their were days when someone told me I am inspiring and I wanted to run them over with my wheelchair and scream at them making all the noise in the world to scare them off. HOW DOES THIS PERSON.... HOW DO YOU DO SO MANY VIDEOS??!! I was thinking to myself how in the world does this person do so many videos. If you tell me you think I look nice ok fine sure ok... but if you can tell me and mean it I look sexy and your not into wheelchair for some odd reason or whatever odd kink, that would be nice. For me it is not so much how I look to me it is when I am told by some rude person that basically they do not like the way I look.
“When life gives you lemons but you’ve got a chronic illness so you’re too tired to do anything with them” I’m 100% using that 😂
In my case, every single joint hurts too much to even try to squeeze a freaking lemon. Just holding the lemon could be painful. We'll just call them centerpieces.
This resonated with me too. I felt it so much. I also have EDS and POTS.
Your exhausted voice somehow sounds very soothing to me. It’s like “yes everything is shit but we’re still here”
I can relate to this.
Y'know, that's how I feel to recently lol
It gives me so much ASMR
I'm a 69 year old woman with EDS. After church on Easter, a man stopped me to ask if I was from Texas, because he said I had a "Texas Swagger", which he found appealing. I was walking with a cane and had braces on my knees, and was suffering from a number of subluxations. I was using my upper body to move myself forward, as my lower back couldn't do it.
Still, it was nice to get a compliment of any sort.
Cowboys had chronic pain and illness too hehe❤ Bowleggedness was actually a chronic illness! Sorry for giggling at this comment, sending my best
😂 I was attracted to my husband’s swagger when we first met. Turned out to be a low back injury.
Jessica, thank you for making this video. The number of times I've been having a flare and I say something like "Ugh, I hate my body, it's like it's always malfunctioning" only to be met with "No, don't say that, you're beautiful." Like, I didn't say I wasn't, but I am in terrible pain, so let me be mad about that in peace.
This! I got so sick in a long term flare over the last year that I lost a full third of my body weight - and all anyone says to me anymore is "wow you look great!"
Thanks, I hate it. That is the absolute least of my priorities when I couldn't eat, can't sleep, and lose my lunch every time I get into a moving car. Love being completely out of control of my body, and for your information sir I actually liked my curves but I'm so glad YOU think I look better now.
Exactly! I'd like a new body, it can look the same but it had better work! The season change is flaring up both of my autoimmune disorders.
This - I'm in constant pain because of sciatica and a wee curved back etc etc and I'm also overweight. God forbid I get frustrated with my sore bits or my exhaustion related to them. Or call myself fat (which I am). I really hate it when I get told 'oh but you're hot/sexy/beautiful' and I'm like 'you know the two aren't mutually exclusive and I can be frustrated at the pain I'm in? I also get the 'oh but if you just lost weight...' sure but I eat healthily (relatively) I am just not terribly active. How do you propose I lose weight? Starve? Suuuure
@@danitini14 Ah yes. My response to some people about "how did you lose so much weight?" was "Well, you get dysentery and then have diarrhea every single day for three months and fail to absorb nutrition. So now I've got intestinal issues I'll deal with the rest of my life. Don't recommend!" Fake big smile. Wry. I'm with everyone on the "just let be be mad at my body for a bit" because 'why won't you *just* work' is a nearly daily mantra with me (and it sounds like a lot of us).
@@TheEileen i did something similar. I went from a size 12 to a size 4 in two months as a teen. People would be like "omg, your so lucky, I wish I could do that" and I'd go "Yeah, because remembering something deeply traumatic that you've repressed for years that sends you into depression so bad you literally don't care if you die and it straight up kills your appetite is so easy. Really, it's amazing everyone doesn't do it."
Raw, whispering Jessica speaks about powerful thoughts and feelings. ❤
I’m a trans woman but I’ve never found another trans person who can describe the way I feel about my body better than you do when you talk about chronic illness. Online trans discourse is so hyperfocused on keeping the community positive as it fights for survival that I feel like this perspective isn’t really welcome. I’m just grateful to have something, somewhere that I can relate to, even if it wasn’t made by someone in my exact situation.
♥️
Another trans woman here, and I know exactly what you mean. 🏳⚧
Sorry if this is out of place, but I have found the personal stories of trans people around me make me feel seen. though that feels like the wrong word. I guess the trans community and the disability community have a surprising amount in common. Like a lot about how my trans friends describe feeling about the medical community makes me feel like they understand me. Sometimes we have ways to help each other. Like when they recommended a version of a medication that did the same thing as one I was taking, but that did not make me want to barf whenever I had solid food. I brought it up with my GP, and their response was "well we could try that". I was screaming on the inside because I had been telling him about this for 4 years! Thankfully I can try and return the kindness by helping them navigate what little legal protections they have whenever work, their insurance, or society in general is being terrible. I guess that MBA was good for something after all haha.
@@antoniomromo I have a disabled wife, and yeah. The overlap of issues is real.
As a transmasc nb with multiple invisible disabilities married to a transfem with invisible and very visible disabilities and living with another disabled nb I can fully vouch for just how much overlap there is in the experiences of disabled and trans people. Oh you never felt at home in your body because it didn’t line up with your internal sense of gender but your feelings were dismissed throughout your childhood and adolescence? I know that feeling because I never felt at home in my body because it was constantly causing me issues that were dismissed throughout my childhood and adolescence! And we both have to constantly remind ourselves that we’re not insane for wanting our bodies to feel more the way we know they should while we struggle with medical systems that are outrageous! Do you know a good endocrinologist in (insert city)?
When you said “I can’t be my body’s enemy” that really rang something in me. For a while now, I’ve been struggling with the feeling that I’m fighting my body, that it is in some way *my* enemy. I keep trying to take care of it, and it keeps making that as miserable as possible. I don’t think I can be positive about that, outside of making jokes, but I would like to strive for at least neutrality…
Also, thank you for including the content warning! I hope your lungs get sorted out right quick ❤❤❤
Anger is a stage of acceptance. My body has new random symptoms every day, and none of them go away, they just pile up. I'm usually annoyed with my body for this stress (ironically stress causes most my issues), but once I go through that, being angry only gets you that far. Eventually you accept it and just move forward. My sentence of grief is "so this is my new normal now". I often ask my physical therapist when a new thing happens "is this normal or just a me thing" because I have no idea what a body is supposed to feel like.
One of the metaphors that really resonated with me is that we need to have a relationship with our bodies like a parent has with their baby.
Sometimes babies are easy to like, they communicate their needs clearly and stop complaining when those needs are met, and being a parent to them is easier. During those times, the parent can live a life outside of parenthood, maybe go to a cafe or watch TV while baby sleeps.
Other times, and for some babies it is most of the time, they cry and make messes and do all manner of things that mean the parent can't do anything else except attend to their needs. And it's very hard to like the baby, and a lot of parents feel resentful and trapped by their child in those circumstances. This can, in extreme cases, lead to children who are neglected and abused. And in less extreme cases, it leads to kids who have internalised the idea that they ruined their parents' lives.
It's ok to not like your children all the time, it's ok to sometimes feel angry with them. But it's not ok to not love them. It's not ok to put them in a position of ruining your life, because we know that will have an enormous adverse effect on the child.
Similarly, some bodies are easier to like than others, and let their owners do whatever they want, whenever they want to, most of the time. Other bodies aren't able to do those things and need much more looking after. The owner of that kind of body has every right to get angry with it, to find it frustrating. But to lose sight of the central love leads to people neglecting their bodies (by ignoring signals because they are inconvenient) and abusing their bodies (rates of deliberate self harm are higher in people with chronic illnesses). And in other ways, making your own body the villain in your story can only lead to negative psychological outcomes.
Babies and bodies are hard, and some are harder than others. But they fundamentally need love.
Chronic pain person here too. I've been on about this so much to everyone around me - I don't need to get a pat on the back for "oh but you don't look sick". I need people to tell me "I see you are in pain, and if I can help you, please let me know". People need to stop saying "oh that sucks" and "sorry you feel this way" and start asking questions, start reading and understanding, and empathising.
100 percent agree.
"I see you are in pain, and if I can help you, please let me know". Thank you for this sentence. I usually respond with the other stuff because that's actually what I was feeling but didn't know how else to express it. I want to help but just wasn't sure of the right words.
@@gwynnmccallan8856 The best thing you can do is be as detailed as possible, express details you notice, changes in the person in pain ( "I notice you get tired more today than usual. Would you like to sit down?").
That makes a person feel like you have paid attention and care. Absolutely avoid clichee phrases like "sorry to hear that" or, God forbid, never say "that sucks". Those are extremely invalidating and can also be seen as "yeah I don't care, deal with your own issues, bye". And I don't think that's what you want to come off as, but those phrases can be understood that way. And nobody wants to be around people who invalidate their pain. For peopel with chronic health problems, we already have to deal with tens of doctors who invalidate us on the regular, least you can do is not be one of them.
Completely agree.
Absolutely agree. I cannot stand being told that I don’t look sick; I know it’s usually (usually) meant to be a compliment, but it just feels so invalidating. I love the phrases you suggest.
Right now, I'm in a crohn's flare and all my ribs are out of place. So I feel you. I really, REALLY do. 🙃
Oh no!
Fibro and HSD pain flare with bronchitis for me right now, so helpful to hear this today.
@kelthulhu Crohn’s flare and sciatica here, what a wonderfull combo. I feel you too 🫠
So helpful to hear and read all of you today, thanks
EDS flare over here lol
And the worst of my joint pain is in my chest (because it turns out there’s joints there lol) so I can’t even complain about it without people getting excessively worried lol
I have a disability, not obvious to the general public, but it requires me to adapt, be creative and even have a touch of Sherlock Holmes in sleuthing my way through life. Until this video I had not thought of those skills as relevant or important. Thank you Jessica for helping me to appreciate my skillset.
I LOVE this comment!!! WWD [Women With Disability] ARE skilled because we have to be. Also, acknowledgement if this, ie really seeing this, is so important..
Being vulnerable and raw publicly like this is so much harder than people realise. Thank you, I felt every second of this.
I can really relate to the feelings of toxic positivity. When i was a teenger, I hated the way my body looked, and went on a mission to learn to love my body, appreciate it, practically tell myself off everytime I felt remotely negative about it. The past few years, i started to experience pain all over, and pushed myself to be positive through it all, to the point where I ignored what was actually going on, until I was diagnosed with fibromylagia. The pain had become unbearable by this point, I had to quit my job because of it, have avoided relationships etc. Suddenly I felt as if I had failed, because I had how my body made me feel. All the therapeutic advice was to appreciate my body, how 'strong' it was, and that if I think negatively the pain will be worse and I will be causing it, in a way.
Today I've had a horrendous flare up, left work early and am currently in bed, psyching myself up (for the past 3 hours) to go and get a glass of water - I hate my body right now. Not all the time, but right now, it sucks. I'm not a failure for hating my body, it's just how I feel right now, and given the amount of pain I'm in I'd say those feelings are valid. It's not all bad, but it certainly isn't all good - something I'm still trying to accept.
If you're concerned about a friend's plummeting body weight, by all means, ask after them. But don't open with "You look like trash, mate." Try asking if they're okay. That's a good place to start.
I’m currently reading a book about reclaiming body trust. This vlog tied into it nicely. I remember my mother telling me I wasn’t really sick when I felt horrible. I also recall doctors telling me my anxiety wasn’t real or that it was all in my head. Um, excuse me?! I think there’s a low level of body distrust in a lot of women as we’ve been taught by society to distrust our bodies.
this really resonates with me, could you share the name of the book?
+
thank you for this comment--this is such an aha moment for me
I always respond to the 'its in your head' with. Yes, that is where my brain is.
After all anxiety and depression are mental illnesses. It's all my brains doing
My mother: "Migraines are psycho-somatic." Me: My head is killing me. My mother: "I just told you that your headache is psycho-somatic. That means it doesn't hurt anymore. I told you it doesn't hurt any more." Me: But ... My mom: Nope, I told you, it doesn't hurt any more.
Cue 20 years of therapy 20 years later to figure out how to stop ignoring/hiding everything wrong with me from my own damn self.
Yes to everything you said. I cannot walk or eat but “at least you look good.” This makes me furious. It minimizes my pain and illness. I don’t want to linger or wallow in my illness but at least acknowledge that it sucks bad and this isn’t fun.
Wow, I needed to hear this today - thank you so much. Hugs from another EDS sufferer
I love your outlook. Neutrality is fine. It is what it is! As long as I’m not at war with myself, I’m ok. I hope you feel better very soon! Sending you healing thoughts and wishes ❤
It is so freeing to hear a fellow disabled woman talking about the times where our bodies act up in a way that isn't pleasent or comfortable without society's need to sugarcoat it and tell us we are strong or inspiring for living with our own bodies in a day-to-day life, really appreciate it, thank you so much ❤❤
It’s easy to love when you only love the good bits, the functional bits of yourself.
I have struggled with my brain bits all my life.
My mom has struggled with her body bits all her life.
Now, here we are, she is 83 today (yes, today 🎉, she never imagined she would reach this age, I did, cuz she’s stubborn and strong), I take care of her full time.
We help eachother with our bits.
Every day is a struggle, some days you win, some you don’t.
Trying to love all our bits, despite all the frustration and hurt.
❤
Body disconnect being fostered at an early age by adults is a big cause of worsened disability when one grows up IMO. This video is important Jessica, thank you for this one.
1:08 "when life gives you lemons but you've got a chronic illness so you're too tired to do anything with them." I wish I had the energy to stitch that on a pillow I can hold for comfort when Im feeling upset about the things I want to get done and need to get done but don't have it in me to do.
I appreciate that you give yourself permission to be lower energy when you’re feeling especially unwell. I think when creators have a very specific way they present themselves most of the time (like your usual very smiley and upbeat manner) they can be afraid to let their viewers see them any other way. Letting us see you on your lower energy days, where you speak softer and lower because easier and more comfortable when you’re unwell is just really nice. Like it’s a great reminder that that the people we follow online are humans who go through stuff, which can get forgotten sometimes. I appreciate your vulnerability and transparency and hope you’re feeling better soon. ❤️
I understand I'm on a permanent feeding tube, RA and spinal disease my back is currently out. I also have a auto immune disease as per the permanent feeding tube. I take care of my dad with cancer. Lost my mom in 2021 my husband Jan 2023... all I got to say us enjoy every moment you guys have together. It's ok to have bad days. I allow myself to have that. When your so tired you can't even move your head silent tears it's ok to just be. I love you girls. You're amazing mom's.
I hope to find the right words... but your comment really brought home how strong we as humans are. Even in the face of struggles like yours we try our best (and what works is enough) to help and to live life.
I wish you many days of joy in your future and that things can get a bit easier.
Best regards, Larissa
I have CFS/ME and I wash my hair no more than once a week pretty much always, and I don’t mind that part, but I do find it important to vent about my limitations, for sure! 💛 Sometimes it is discouraging to have fatigue and all the other symptoms, and I wish so much I were healthy and normal. You grieve what could’ve been...don’t you? I’m sorry you were invalidated so much as a child. ☹
Fellow ME/CFS sufferer here, been thirty odd years so pretty much done my grieving but strange you should mention it. I have a friend who has been fit and strong and very hard working and active his whole life but recently his body has let him down. He's had strokes and heart problems and of course he can't just get up and fix stuff and do big gardening jobs any more and it's completely stressing him out to the point that he's been offered counselling. Only this morning I explained to him having been in that same place when I became ill, that the loss of your physicality and sharp mental faculty is like a bereavement and we have to respect it as such to process it.
I'm hoping I'm on the way up from a relapse after getting the awful cold doing the rounds, it's knocked me back worse than COVID, how's that for weird?!
Wishing you more good days than bad...ooh...have you taken part in the DecodeME trial thingy? If not do look it up, there's a website or it's all over Facebook or TH-cam. They're doing genetic testing to try to find the cause and they're still asking for more folk to take part. It's a questionnaire, then if you meet the criteria they send you a "spit kit" to collect your DNA anonymously to try to find some commonality. By the way it's set up especially for our condition, geared to work online so you can pause and come back to it later and questions are simple and clear so as not to fry your brain! Sorry I'm trying to give as much info as I can but I expect you already know all about it...I'm assuming you're in Britain of course as it's not open to those abroad....let me know if you need to know more. 👍😏
There are times when I do not like my body at all. I'm sick of pain,. I'm sick of frustration of not knowing whether I will be able to do things or not. It's not a body that's ever looked particularly nice either.
When my body is failing, and I'm so sick of it, I think to myself. These are the arms that hug the ones I love. These are the eyes I use to look at this wonderful world. These are the ears that listen to stories of joy and of sadness. These are the feet that take me places (most of the time). These are the hands that make food, and crafty things. This is the brain that allows all of this to happen. The kidneys aren't too bad either. But, it's me.
It helps me to think about the things I CAN do, even when my body is failing to do some of the basics. I don't know if it is because there's an illusion of control, but it helps. :)
I am currently on day 3 of my most current fibromyalgia flare. Barely able to move or even go to the bathroom. Once again reminded through severe pain that it is possible to feel pain everywhere all at once. Between the fibro, migraines, hernia, osteoarthritis, allergies, asthma and numerous other medical conditions/issues, it honestly feels like my body hates me. So I feel you.
Worse part? My bathroom is on a separate floor….. 😭😭😭
Point is, I live for your videos. I hate that you’re in pain and suffering permanent and serious health issues as well (would never wish that on anyone), but at the same time, your videos help me remember that I am not alone in the world and that there are others who understand, feel the same and care. Thank you for giving voice to all of us!!!! Love you!!! And hope you feel better soon and that your wife and son are well!
Bathroom on another floor is just ultimate torture when you are in body pain. I have arthritis too all over and it sucks. I live in a one floor apartment luckily but some days just standing up is brutal. Meantime my family think I’m ok to fly across the country to attend a family reunion. I said no and am feeling guilty even tho I know I’m better off staying home. It sucks to have chronic illness.
Ps meant to add maybe you can get a bedside commode for the worst days.
@@fragilefleur I too have been made to feel guilty about literally not being able to walk or eat and attend family events. I eventually stopped most communication with those family members. I struggle most days and do not need the added guilt.
Thank you for saying these words, I needed to hear them today. I am trapped in bed with blinding pain from Systemic Lupus and this was a reminder that it doesn't always feel like this. I emailed this video to my sister as well because I was trying to explain this exact thing to her-- the fact that I can both love and hate my own body because at the end of the day it is my body and it is the only one that I can ever have so I have made my peace with that. Sending you all of the healing prayers and a totally not creepy internet hug.
My first experience of chronic pain was as a teen being told my body aches were growing pains - despite not having grown in years. It’s weird when people tell you something is “normal” when it’s definitely not normal.
Oh I can relate to this. My knee and back pain was attributed to "growing", but I wasn't growing anymore (13-14 y/o). Turns out I would have needed surgery when I was like 6, but it was too late because I was grown. Thanks, crappy family doctor 🙄
I was told by my doctor that what was clearly my joints not coping with an increase in sports training (eventually diagnosed as EDS, 13 years later) was "just stress" so I put up with the pain through years of full-time training instead.
I remember this happening to me too, my mom told me I just have "walk more" for it to be okay, but that clearly didnt work. She takes me serious now, but it's years too late for it to make a difference
"Is my body a part of me" Felt that one! As a disabled person with chronic pain and also gender identity questions, this hit really true. Hope you don't have a lung infection (again) and start feeling better soon
I got covid for the 3rd time ( I'm full vexed but am immune compromised.) Feeling like hot garbage seems to be my default. I try to be body neutral, as there is to much that causes me pain to be positive about. My health issues are rather tangled as my disabilities are from child abuse. So it is a tangled web of rage that I often deal with.
"We tell people that their flaws are beautiful as a way of telling them that their flaws are irrelevant."
I have always had these thought about 'complimenting/a positivity movement as a method of deflection' but i've _never_ been able to describe them as powerfully and succinctly as this. Thank you Jessica - this really resonated with me.
Honestly body positivity is so hard for me because my chronic illness is a major factor in why I gained weight and also a major factor in why it took so long to be diagnosed (we love doctors just saying stop being fat it will cure fibromyalgia). It's a really tough thing to handle seeing active and honestly debilitating body discrimination being essentially belittled largely by thin able bodied people saying hey I have a stretch mark so we're all the same it's all good!
I love how Jess brings out how it’s not necessarily to “love” the things that hurt you even if you were physically born with them. My disability isn’t beautiful to me, it’s painful. I don’t love it.
I can relate so hard to it. I hate my mind today
❤
I am so ill right now. I’ve been I’ll for years and no one listened. No one believed me. Then my health just exploded and then I got Covid and that made everything even worse. Your videos get me through. They validate me in a world that makes me feel like the most invalid person who ever existed. Thank you ❤
You are amazing. As someone with multiple invisible illnesses that impact every aspect of my life, I'm so grateful to see myself represented. Your soul is beautiful and your work for the community cannot be extolled enough.
Thank you for your transparency and sincerity when discussing your reality.
I feel really disconnected from my body right now, like it's this thing external to me that betrays me. Your words were so helpful! And I'm impressed by your ability to show such vulnarability, and to show it's okay to not be okay sometimes.
TW self harm.
I've got a chronic, unending condition that causes a permanent migraine. Makes it difficult to form new memories, colours disappear beyond about 2-ish meters and on a good day is just "severe." Over the last 15 years, I've tried to end my life 3 times (last time was almost 9 years ago now) because I hate this broken, defective body.
Externally, I'm in great shape. I meditate to manage the pain, I make compulsive notes to remember things and I get lots of fitness. People say "you don't need to hate your body, because [insert well meaning complement]" but I have no reason to like this agonising, corporeal form I'm stuck in.
Anyone who reads this, please leave a supportive comment telling me how much you think my almost 40 year old body absolutely sucks ❤️
❤️It really sucks!❤️
@@jennifers5560
Thank you, Jennifer! x
NGL that does sound like a living Hell. I would have chronic migraines if I didn’t almost daily take Advil. Migraines when they happen nonetheless are super disabling for me
Thank you for saying the things people don’t need to say!!! My daughter has hypotonia, an ASD, hydronephrosis, and other things we are looking into due to a genetic issue. I can’t stand people saying some of those things. You don’t need to feel sorry for us and about all the doctor appointments. This is life and it’s different than yours (person making the comment), but we don’t want/need your pity. We’re happy. My daughter is happy!
I'm working very hard on letting myself feel the bad days and not push myself through them unnecessarily. Had my first appt with a new doctor today and felt heard for the first time in a long time.
Please do a video on when people accuse you of using your disability as an excuse or crutch to be lazy. Are they gaslighting me or am I guilty of learned helplessness? I've researched and tried different health treatments for years, but my mom still doesn't understand.
I have limited energy throughout the day. And the more things I do, the less energy I have. Considering I'm not the only disabled person in this house, I need energy for emergency situations in case they come around. So it's a question of what I can do, what I should do, and what would be a stupid idea to do.
What's a dumb idea to do: walk up and down the stairs multiple times a day. Yes it's exercise and exercise is good for me. But if I do it too much, that means no energy to function for the entire day. I need to have energy to do certain things during the day and I need to not exhaust myself for the week. Going grocery shopping means I often sleep for two days if not longer. I'm still recovering from Easter Dinner.
That's not learned helplessness. I'm tired. I'm physically tired.
That's not even factoring in how tired my symptoms make me. Which is exhausted. Everything takes energy. Living takes energy! I'm not about to give up living. I'm just constantly evaluating what I can and need to do. If it can get done later, then it's getting done later when I have energy to spare. Running on empty means expensive medicines to take and treatments I have to sit through. I can't always get appointments for those and it's a waste to appease a single person with those. Again, that's expensive.
My energy equals time and money and if it's not worth expending my energy for time and money then it's not getting done.
I’m not completely sure, but I think there might be a video on the topic already. Maybe try searching for Jessica’s name and the word lazy? I vaguely remember watching something along those lines. Or check the chronic illness playlist?
@@NataliaNNS, there's at least a video about pacing oneself. I found it useful, as it gave words for what I already do.
I'm so sorry this is the case for you. Just remember that it'll be you who has the responsibility takes care of yourself for the rest of your life, even if you want the support of others. My experience is the best way to get that support is to find what you need, learn to articulate it regardless of whether it's accepted, explain when needed, and then accept nothing less, whether it's you that provides it for yourself, or others.
It took about 4 years for my mother to accept that a milk allergy that exasterbates and triggers blacking out, fatigue and multiple other symptoms wasn't just in my head. She even tried to 'sneak' dairy into my meals so she could prove it to me. When I started making my own meals without in a separate environment many things improved. Find what you need and make it happen.
@@NataliaNNS - I recall there being one too... I think it's called 'You're Not Useless'.
I am luck in that I have your standard aches and pains for my age and profession. However, my sister and my Mom are in chronic pain. My Mom's condition will continue to deteriorate and she is not pleased with her body. I am going to have her watch this video. My sister is in the middle of a flare and is so frustrated that she can't do what she was able to do just 2 months ago. Watching your videos helps me to understand more what my Mom and sister are going through. Thank you for sharing even when it must be so very difficult.
I finally got my Botox treatment done yesterday. It’s a 4hour round trip to get to my doctors office. It was almost a month late and it takes a week for it to take effect. I’d like to be able to get a new body. I have chronic intractable migraines, but the Botox turns my pain level down by a significant amount. I’m fighting with my insurance company for a wheelchair to use to get around my house😢because I also have multiple sclerosis and crippling fatigue. I occasionally just fall down.
We do what we can.
I’m replying to myself but I also have intractable nausea, that we only discovered because I was telling a fellow migraine sufferer some of my tips to get food down when you can’t. Gastroparisis I have been told might also be a problem.
My empathy seems to be unexpressed in a normal way, being autistic myself makes me think that telling you about the situation with me is a way to express my sympathy and empathy. I understand where you are coming from, but that’s impossible so I’m telling you where I am coming from hopefully we can meet up in the space where our experiences overlap?
I’m feeling terrible today and I wanted to share my little quiet place with folks.
I really relate to this video. My issues being mental health and being trans. When it comes to body positivity it feels like there is the belief that the only way to defeat transphobia is to always love your trans body. But the truth is... it's a complicated relationship and it always will be. Hormone therapy has certainly helped alot, but it's always going to be a complicated and messy relationship.
I know these videos are probably very taxing and challenging to make. Thank you. Seeing the hard days is so helpful to understanding the challenges that other people face.
Watching this on a day where constant cluster headaches once again fucked up my attempt at a workout schedule just feels cathartic. I hope things will get better for you asap
having had splitting headaches the last week because of high air pressure (not quite on the same level as my migraines but still annoying and debilitating) I get you about hating the malfunctioning body. also the amount of times people say "but you look so attractive" when I explain my medical issues. As if me getting 10+ dislocations per day would somehow be less of a struggle just from being pretty.
I'm 61 with cerebral palsy among the list of many illnesses I have... I love how you cut throught the malarkey and speak your truth is elegant ways. I wish to be as elegant as you are when expressing myself.
That brave, chirpy and sometimes snarky front you present for the reasons you alluded to would get in the way of the message for me. This entry was raw, honest, pure and very relatable, even for one without an invisible illness.
I love how Jessica addressed that everyone feels different about their disabilities, bodies, etc... It's so common that people within the community say "disabled/colored/LGBTQ+ lives are x, don't do y", but in reality, I see the next person over and they actually really appreciate it when someone does "y" and feel validated in different ways.
"I can't be my body's enemy" resonated DEEP today. I am in the throes of a flare and find myself feeling guilty about the pain. WHY?! Pain is not something I can defeat, but it is something I can learn to work with.
Hugs! Being invalidated can be awful.
Sending hugs to you too! 🥰
@@jessicaoutofthecloset A million thanks!
Body positivity can be helpful but can also feel pretty toxic if you’re not doing so well. I had an accident a few years ago which left me living with an amputation that involves having skin grafts that occasionally break down so I can’t wear my prosthetic leg until it heals. Because my circulation in that leg was compromised it heals ridiculously slowly. Today was the first day in 21 days I’ve been able to walk at all and while it was great it also hurt quite a lot. I have so much empathy for you being frustrated in your own body because I have spent three weeks cursing mine. It makes me nuts when I hear things like “but you get so much done from your chair it’s amazing” then they follow it up with my least favourite phrase in the universe “you’re so inspirational” 🤬🤬🤬🤬🤬
Your personality is literally so lovely. You are a genuinely caring and supportive person. I am so thankful for your videos, especially the ones about chronic illness. Your videos make my day brighter and have taught me so much.
Your videos bring me so much comfort Jessica, I have ME/CFS & hEDS, I’m an ambulatory wheelchair user because you helped me accept I need it… your honesty and rawness brings me comfort every day, so thank you
This is reminding me of a discussion with my therapist about sadness/depression and happiness/mania and how being happy/feeling positive and feeling forced to feel that way can sometimes be as bad or at least unhelpful as the sad/depressed side of things. I had been at the time been talking about mental health depression at the time, but I have found it a helpful way to think about my ankles when they decide to complain or other things than just depression. It's ok to not be positive all the time. In someways if you're positive all the time about certain things it can almost be a problem in itself...
Thank you for sharing!
I'm in a bad flair currently. Feeling like a useless waste of space. I have chronic pain, & chronic fatigue, and right now my fibromyalagia and gastroparesis is in a flair.
To many couch days lately.
Trying to get to a place of neutrality with my feelings about my body.
Hope you feel better soon. (Well, as better as you can.)
I have recently been diagnosed with EDS and it brought me a great deal of answers about my body. I struggled a lot with my relationship to my body since my childhood thanks to unexplainable ilnesses and allergic reactions and all that stuff. Now, I view my body as that lab partner I didn't chose to work with but we ultimately have the same goal so me make it do and are cordial to each other.
Jessica you are the most articulate person I have listened to, when it comes to explaining how you feel about your body and illness. Your thoughts allow others to feel comfort in how they are feeling, and the pain they are suffering. Currently wish I could have a day where I don’t feel like crap. Hope the flu leaves your and Claudia’s body ❤❤
Oh, the timing...
I'm just getting over a bad bout of the flu-- which yes, always kinda sucks--but I have Adrenal Insufficiency and Hypothyroidism, which means my immune system 'called in sick' (😉 😅), and it hung on for what felt like *forever*...
Add to that some LOVELY menopause issues, and I'm kinda ready to just give up on this old body, trade it in...
Trying to keep a positive outlook--a *healthy* positive outlook--when it feels like our bodies are betraying us--yeah, that's a tough one.
THANK YOU for sharing with us; it helps. ❤
I have RA and fibromyalgia. I just had surgery on my left foot and next month I'm having surgery on my right foot and then (hopefully this summer) I can get my left knee totally replaced and then I don't know, maybe next year maybe my right knee.
I had so many aspirations for my life that my body just won't accommodate.
So I'm just trying to say that this is sadly relatable and I'm sorry that you're feeling so shitty.
14:29 I had a failed epidural when I had my youngest who is now 16.
The second time he went in to do another attempt, he broke the dura and then said, "Oh well, now you're going to have a spinal headache."
He said it with authority while I was in labor and my brain was like OK I guess that's what we're gonna do.
I got a blood patch done the next day from a different anesthesiologist who I wanted to marry after he did that because it immediately makes a headache go away (if your body works correctly.)
And thankfully mine did cooperate with that. But I got electricity shooting up my spine in spasms often on for years after that.
My goal is body neutrality. ❤❤❤
This video frankly gives me so much comfort as the last few months of my life have been hindered in very similar ways. With out a diagnosis my disability has pretty much ruined my life the last couple years. (though mine are often the same symptoms Jessica lists so she set me on a diagnosis path with information I can use to speak to my doctors on!)
Add in pregnancy and diabetes my family encountered homelessness due to how hard things like flu and covid can effect my body. It's felt impossible to love anything about my body.
Hi Jessica, no sorry for what you are going through. I can another way to show solidarity, my bones, teeth, connective tissue and some genes are haywire, oh joy! My tmj, and most of my other joints are getting worn away for autoimmune reasons, argh. I struggle to eat toast of all things.
I love you so much for showing how autoimmune disorders actually affects people like us, my super hubby and your Cloudfoz are our pillars lives.
Feel free to reach out to me if you ever feel up to it. Xx
Thank you so much for making this video. I don't hate my body today, but I hated it yesterday! And I'm sitting in bed feeling ill wondering "how am I supposed to love this?" Society, strangers, and even loved ones have difficulty understanding, and I often feel pressured to love myself. Thank you for giving me permission to just be sick and grumpy. Really, thank you
💛Sending you much love and I can relate to this as an autistic, chronic fatigue and mental health stuff going on through my life. Btw I also have discovered the Sims and twitch recently xx
Okay but as a fellow EDS spoonie who DID spend all day in bed yesterday due to a migraine - you ARE amazing for getting out of bed today! Any day we manage to get out of bed is a win. (Though notably, not being able to get out of bed isn’t a loss…it just…is.)
Thanks for talking about this subject. You had a lot of great thoughts, and I appreciate that you used the spoons to articulate them ❤
I suffer chronic migraines daily and am disabled by them. Due to many medications through years, my gastric lining is very sensitive and I get gastritis very frequently. It's very hard to love our bodies when we feel like they're failing us. Especially when something helps us with one condition but makes the other condition much worse
I can't tell you how validating it is to hear you articulate your experience. It so very mirrors my own. I still struggle with identifying what my symptoms actually ARE, or to articulate what they are, because I always felt the only option of trying to explain myself was within the framework of what I was told by people looking at me from the outside. I've been told over and over that my experiences are not possible, or that it's just something else, and years of explaining my symptoms as a description that will be accepted makes it hard to explain them as what they are.
The first time I remember blacking out was in kindergarten sitting cross-legged in a school assembly, I had no context to understand what was happening, all I remembered was waking up flopped forward, my face on the ground, being bapped on the shoulder by a teacher who told me to "stop playing around." So... I thought I was playing around. I had been bad, I was bad. Food not staying down - I was just a needy child with a nervous stomach, prone to car sickness, given medication to keep it down. Tummy aches - clearly a child who wants to stay home from school - off to school I go. I got bloodwork, it came back normal. Not following along in class? I just needed to learn study and focusing skills with some extra help after school (definitely not losing my hearing). Shoulders popping out of their sockets while sweeping and choring? Thats not a thing. Vertigo and complaints of walking into walls was clearly just exaggeration - "you look fine, everyone has a bit of dizziness now and then." That continued on through high school. Blacking out in gym class while running, light headedness, running sideways, I was told to "stop tripping over my own feet." I got a C. Continued on through university - I was just overwhelmed by classes. I saw myself constantly through others people's responses - this is who I thought I was.
It wasn't until my twenties away from home when I was in bed days at a time, shaking, unable to stand - or - when I did often blacking out and waking up in a morning's liquid breakfast that I convinced myself and those around me that it was not normal, I was not making it up, I was not exaggerating. And none of my symptoms were thanks to "enjoying my freshman years a little too hard" because there was none of that.
15 years of determined self care and slow improvement and it's still hard to feel valid, I look too healthy. I take my self-care seriously, but aside from my partner I don't try to explain it to others because history has shown me it's pointless unless I have a specific need. I'm still working to identify what some of my symptoms stem from. It's a slow road to knowledgeable care and I'm in a 1.5 year waiting list for the next specialist, a cardiologist with experience in dysautonomias - but at least with growing community and shared experiences like yours people like me can see we're not alone, and have an example of how to communicate our experiences.
Oh my gosh, I really needed this video today. I also have EDS. I was having a really bad physical day today, and I had to stay home from school, and I relate to the title a lot. I struggled with really similar things in middle school and highschool that you described about teachers and adults telling you that everything was normal, or nothing was wrong. I fell down and broke my leg because my EDS causes my bones to be very brittle, and my gym teacher told me to walk it off. In highschool I rolled my ankle and was told by doctors I was fine until six months later found out I had torn a ligament. I really related to this video and it really helped me fell less alone. So, thank you soo much. Love you Jessica ❤
you are definitely not alone, i’m sitting here in pain from eating 3 hours ago 🫠
i hope your body is kinder to you tomorrow!
🥄 sending spoons 🥄
I feel this. I have "loose joints" as a general diagnosis, and I genuinely think I have EDS. This week has been terrible. I'm a teacher and my shoulder fell out of place when I was writing so I just couldn't write anymore and I felt so embarrassed. I had to explain to my students how this lesson would have to be short because I just couldn't finish it out. I also keep tripping because my knees, hips, and ankles keep slipping and it causes severe pain. I feel this video so much.
I’ve never thought of it that way before, the comparison between the individual psychological, and social/systemic affects of body positivity but when you explain it it makes sense that they’re actually two separate issues/ discourses ways of thinking and while that doesn’t make them opposing it also means that they have their own specific components which should be examined individually rather than as a whole.
This feels sooo familiar too omgg, lots of strength sending to you from an other eds girl ❤ I want to show your first bit to everyone around me and ESPECIALLY doctors omg, reminds me also of all the comments "but you look so nice today how can you be in such pain like you say ?" oh yeah i look good today cause it's a good day otherwise i couldn't get out of bed :'D but i am also mad at my body lately so this is always refreshing to hear thank you
Or they ask how you can do so much one day bc you have a lucky good day and then you are down for a month. But they say that they think you can do more bc you did it when you could. I wish that were true.
I really appreciate this because I’ve never loved my body, I’ve loved parts of my body and had plenty of times where I hated the parts of my body that were deformed of hurting me or making me pass out in the middle of class and costing me hundreds of dollars beca someone called an ambulance and this is America. But as for my body as a whole I’ve never understood why I had to love it or why it had to be some amazing wonderful thing because it’s just a body and everyone has one and it felt strange to me that I had to be defined by my body when it was such a small part of who I am and most of what it’s contributed to how I view myself has been struggling with it
💙 Hang in there, I wish you more good days than bad! I have hEDS and am in a mast cell flare up atm so every joint injury I have and have had is like, hey I’m still here! POTS? Yeah, still here. I’m in my 30s so I understand the struggle with body image and expectations. We are often our own worst enemy.
really relate to this tbh. body neutrality has been a lot healthier for me than any semblance of forcing 'positivity' about the meat sack i inhabit.
Thank you so much for talking about this. Your early life experiences sound very similar to mine, I'd be told no it doesn't hurt that much or no it isn't that bad. I suffer migraine with aura and they started after open heart surgery when I was 6 years old. I have ME/CFS as a result of glandular fever when I was 17 too & I'm 31 now & still get people saying "well you look lovely/fine" etc & it still makes me want to scream. Same with the chronic pain I have.
Body positivity can be great for some things, but not when it turns into toxic positivity thst doesn't allow you to express anything bad.
I'm going to share this with so many people because yo make the point wonderfully & I'm glad I'm not alone. Thank you❤
Gosh this is so real! We were having a conversation about it with some friends just yesterday. It's really something that a lot of abled people cannot get their head around .
That thing where adults tell you something is normal or else not what you're experiencing! I am in the process of learning to listen to my body because I got so used to ignoring pain and discomfort until I had NO CHOICE to stop. From the outside, it'd look like I was going from fine to non-functional in an instant.
Thank you for putting this into words so well. It's really validating.
Jessica's video topics always come up at the right times. I'm in my senior year at university, but due to physical and mental health issues I might not pass my classes. Sure I might get compliments from strangers daily for my appearance, but my ribs don't wanna work. Body positivity is more than one thing.
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When you list all your ailments and say, "That's fine." 👌🤣🤣
Thank you for being so vulnerable with us, Jessica. Sending love and light.
There is so much beauty in this vulnerability, thank you so much for sharing. I have MS and it's literally my body confused about everything so I feel being authentic in expressing how shitty I feel is best. It's a way I can reclaim my power over the constant pain and confusion, in my mind and body. Much love to you, wifey and bebe
Thank you as always, Jessica. I have the most grief regarding how my health has affected time and opportunities - as I get older the hourglass runs down quicker. Most grief comes from people passing away, and not being able to spend time with them or say goodbye. I've had ME/CFS and fibro since I was young, but it's a recent back and hip injury that's left me more frustrated with my body than I've ever been. I realize I was quite accepting of the rest in retrospect. Just being able to sit is now such a complicated thing - and I thought it was bad before with fibro! The injuries aren't permanent damage, thankfully, and it's just very very slow building up strength again due to CFS and fibro. In the meantime, more loved ones get sick and pass away. There are opportunities I can catch up on later, but not people's lives. Damn. Thank you for the opportunity to vent in the comments section!
You have so much humor about something I know you really find frustrating. I love you for your outlook and how you handle such bullcrap.
I said bullcrap because I know you never swear.
I'm having such a hard day today with my dysautonomia because of the humidity, and it is so incredibly encouraging to listen to you and know I am not alone. I cannot help my friends and family understand when I say small things like that can change whether I'm able to even get out of bed or not as they don't have the same experiences, and I love having this community for that reason. Thank you for being you Jessica
Ive watched your videos for so long now. I just love how you are so real about disabilities! I live in constant horrific pain and some days I just want to scream at the world. Thank you for making me feel not so alone ❤❤❤❤
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This video really spoke to me and Im glad I found it now
Also "if it's so normal, why is it just me?" just became my favorite sentence ever
I’ve been trying to replace the idea of loving my body with self-compassion toward my body.
Same!
This! And with my mind. A little "you suck today but you're trying your best so can't be too mad"-attitude towards my body and mind works wonders. Or it doesn't and that's fine too.
Psychologically I separate my chronic conditions, even the autoimmune ones, from myself and my body. An example of this is when I have a flare, I mentally think of my body is doing its best to fight for me not that it's against me, it really helps my mental state. My body and my consciousness are basically a team fighting against all the internal and external things that are thrown at it. This doesn't mean that I don't get frustrated and I wish my body could do more, but I know that it's doing its best. Hopefully this way of thinking might help someone else.
I just want to say thank you. You address body positivity and chronic illness in such a brilliant way and how it can be so toxic. We are fully entitled to love ourselves, while also being frustrated with and outright hating our bodies. We are allowed to dislike that there is a disconnect between what we WANT to do, and what we CAN do. While I won't say the stereotype "but you look nice", I do want to compliment your original sense of style. While I agree that people shouldn't concentrate on the superficial, unfortunately it is also something some people don't have. I have (among other things) PCOS, and therefore originality and such compliments are something that as a plus size cyster who cannot afford well made plus size clothes, is highly unlikely for me to achieve. It is a rare day I get complimented on my appearance. I don't want to lesser the points you made because they are brilliant, however there are definitely those out there who never get to feel pretty at all.
19:13 i’m 19 years old and housebound because of my chronic illnesses, and i’ve noticeably been getting sicker for about 10 years, but even faster over the last 5ish. when i first started accepting that i was disabled and my body would never function optimally, i had this mindset of being happy about the things my body COULD do. it was okay, but it made it so much harder whenever i lost one of those things (favorite foods, activities, my long hair, etc). After a while, i decided to start just accepting my body as it is and as it changes, and that has helped me so much more. My disabilities are very dynamic, and this mindset reminds me to be equally kind to my body on days i can spend hours talking to friends and do my laundry and on days i can barely take all my meds on time and can barely get to the bathroom. Jessica, your videos have helped me so much over the last few years, as i was a fan of your fashion before i even knew we had some of the same health issues (hEDS, POTS, etc)! I truly don’t know how i would have gotten through my hardest times without people like you sharing your experiences and how you can live a happy life despite everything life throws at you :)
I love this. At times when my anxiety takes over, your words of encouragement on whatever the subject may be, helps a ton. It's like a massage.
As a fat person with arthritis and hearing loss, I really resonated with this today. Thanks, Jessica, for putting words to these feelings, and speaking up when it is so clearly costing you. I hope your body feels much better soon.
Thank you for taking the time and energy to talk about the way that the beauty of the body is prioritized over all the other aspects of ourselves. We recognize your hard work and appreciate you for it. This isn't a topic covered by a lot of people. Thank you.
I can hear someone typing in the background and I love it. It created a calming atmosphere that really grounded me and allowed me to better focus on the topic.
Face nerve pain is the worst. It's the numbness that is getting to me lately... but fortunately, I am strong, and you are inspiring me to keep going when I just want to lay down and give up... I get it. I understand it completely. Migraine is horrible... I am glad that isn't too much anymore. It not being able to hold onto things and walk. Yesterday I was not able to get up or move my lower body for over an hour. I never experienced it before. So it scared me, and I just put my head down on the table and passed out. I am doing my best to maintain positive vibes and keep creating my artwork as best as I can.
Very fatigued today. Wonderful to have your video to relate to, commiserate with a bit. Good vibes to all, especially those in a flare.💛🤞
Thank you.
I'm going through a many month long chronic pain flare with a suprise flu mixed in and I have been in bed for the last week.
I have a lot of trouble seeing my body in neutral light, let alone a positive one. This video is what I truely need to see right now.
It lifts a few of the dark clouds I've been stuck in to know I'm not alone and it's ok to feel as I do.