I have a really great pain management doctor (it took years to find him and I've changed to more expensive insurance to stay) but at this point he and I argue about how low my dose is because I keep getting treated poorly by other doctors and anyone else who finds out I take any at all. Currently have a seriously painful back injury and been refusing to raise it because then the gastro doctor blames everything on that. It's lose lose and feels like their real problem is that I'm in pain at all, like not pushing through even when it's bad enough to cause me to pass out or throw up is a moral failure or crime tantamount to embezzling from a charity.
My Dr recently told me that everybody comes in claiming to have ADHD just so they can get stimulants. Or maybe awareness of the symptoms has spread enough so that people are self diagnosing because their problems have been overlooked/dismissed by the medical system.
@@nataliestanchevski4628 not going to lie, the scariest part of asking for ADHD treatment was fear of the stigma and getting that response. I am a pharmacist and I have the scientific proof to back me up that those stigmas and attitudes are bullshit but I still have that fear. I have the paperwork of my diagnosis saved so I can present it to each new doctor. I am very lucky in that my doctors have been (on a whole fabulous except for one experience with a cardiologist…). He was the one that actually asked me if it was possible that I had untreated ADHD. I had never thought so before and just thought it was anxiety so I went and got examined and yup. I do have it (and so do both of my parents).
@@nataliestanchevski4628 I've heard it said (sorry can't recall where) that ADHD is the most common outcome of something going higgledy in the brain. Add the current climate our brains are trying to function in (social media, cost of living crisis/inflation, loneliness epidemic etc) and I think it's only becoming more common. Plus the majority of nonmedical treatments are also proven to be good for typical brains. I think we're missing the forest for the trees in a way with ADHD, but it's definitely real and medical treatment is definitely necessary for many. It's the dunning Kruger effect though, they know a lot so they think they know everything. Which really is the dark side of awareness summed up.
When someone says "but you look fine" you have 2 options: 1) ask if they are accusing you of faking or asking what concealer you use 2) tell them of course you look fine because you're disabled, not ugly
I am not disabled, but I lost my weight through (warning: TMI) my butt after years of having to plan every hour of my day in function of how I expected my bowel to react after I got what I guess is some form of IBS, which is still following me after a decade. Yet, I get compliments for my figure by people. Like, I am happy with how I look, but I didn't sweat it out at the gym and if I eat enough chickpeas I can get even thinner, all at the small cost of my health. I wish we all got the message by now, but at least I'm happy we're talking about it. Being pretty ain't worth risking your life. Let's change how we think "beauty", because it sure isn't objective, rather thinking that way makes it easier for those that fear being perceived as an outsider.
@@mimmikibilly yep, I lost weight from being in too much pain to workout and often too nauseous to even drink water. But people get really mad when they ask for my "secret" and I tell them the truth. Apparently I'm just supposed to say thank you for the compliment. Ah yes "your sick body looks great" is such a compliment. 🙄
I will never forget the feeling when my dr told me I didn't look like I have executive dysfunction. It was an excruciating effort to make myself "presentable" to leave the house for the appointment after 3 months of not bathing because of the worsening condition of my mental health. 15 years of documented mental health treatment and still having my complaints dismissed by my own doctor. It's soul crushing to not be believed.
It's also funny when doctors scold me for being late to an appointment or not paying for weeks because it makes me super anxious. Like, yeah that sucks for them and I shouldn't do that but I think as a psychiatrist, who diagnosed me with depression, anxiety and ADHD, this behavior should not really come as a surprise. You need to be well enough to get yourself to a doctor in order to get medical treatment, so inherently, the doctors are not gonna see you at your worst. It's absurd when this is then used against you.
@@killitwithfire5377 yep. I had a doctor "inform" me I wasn't in any pain because I was dressed. No, not changed out of pajamas, wearing clothes at all. Like yeah, really can't imagine why I put on clothes before going outside in the middle of winter, I mean besides that it's illegal to be nude in public where I live. A different doc tried to kick me out of the ER "because you're obviously fine because you are answering my questions". Yeah, I don't think replying "huhhhh?" to literally everything is answering. I was told what happened later by my partner who was with me, I only remember bits and pieces. Including passing out in the middle of his "I can see there's no[thing wrong with you]" BS. Oh and my partner is the one who checked on me, despite being out for less than 10 seconds, the doc was gone by the time I came to.
Yep I had the same and had to say how long it had been since I had been able to shower. I think she was shocked and a little bit realised her mistake but still the fact I had washed and managed to get to this appointment was still against me somehow (she didn’t ask how many medical appointments I had to cancel or missed because of physical and mental health issues or adhd and social anxiety from autism.
I'm a therapist, and since getting paneled with insurance, I've gotten SO many referrals from clients who first saw a doctor and was told that their symptoms were "just anxiety". Usually upon ruling out a panic attack, I end up having to refer them right back to the doctor to run tests. Therapists are taught that you can't assume something is psychological unless you've run tests to rule out medical cause, and so I often end up playing medical advocate and have to remind doctors of this until they run tests.
They did this to me quite a few times and every therapist ever agreed that my anxiety and depression is directly affected by being in pain 24/7. Shocker. I'm in therapy with an amazing psychologist who understands chronic pain and on antidepressants, so that seems to put some doctors at ease a bit
Maybe that’s why I finally ended up with a solid diagnosis that made sense for nearly all of my worst symptoms that had previously been blamed on my anxiety, so now I know I have migraines and orthostatic hypotention as well as anxiety and that diagnosis happened after I got a referral to the psychologist in the doctors office for my anxiety, either way thank you for being there for your patients and getting them the medical testing they needed.
I once saw a new provider at my pain specialists office. I was just fed up with the pain and was convinced I was having a hardware issue with the spinal stimulator I had had surgically implanted the year before. He was so condescending, and told me “ I’d really recommend you see a therapist to help with managing your pain”, telling me I my thinking was “too negative and catastrophic”. I went from tearful to furious. I AM a therapist. Side note…. I had a revision surgery a couple months later to replace the defective part that was hurting.
It took my psychiatrists advocacy to get appropriate pain meds. She basically had to vouch that I'm not a drug seeker. Fun times. Didn't even ask for anything strong just something better than fucking Ibuprofen. 🙃
HIGHLY recommend using something like the Mankoski Pain Scale, which has specific descriptions for what 0-10 mean. It includes details like "Cannot be ignored for more than 30 minutes" and "interferes with sleep" as well as painkiller effectiveness. On this scale, a 10 is unconscious, so you will need to show the scale to your doctor if they're not familiar.
My mom went to the doctor and told him that her pain level was a 9 and she was sent home with some extra strength tylenol. The next day she was in so much pain she fainted and had to be taken to the hospital in an ambulance. She was unconscious for almost 9 hours, and continued to be in pain during her 5-day stay. Three months later (yes, three months) a doctor decided to ask for an x-ray of her back (she had been talking about back pain the entire time) which showed that she had broken bones at the bottom of her spine. She was in the hospital for 5 days complaining of back pain and no one took an x-ray of her back?
That is a much better scale. How much [insert symptom] interferes with your life matters a lot more than how your pain compares to other people. Though 10 being unconscious would make it a bit weird for me. Because when my migraine gets really bad, like it's absolute worst, I am non-functional and can't process or really respond much in any way to what's going on around me. Like I'll close my eyes or turn away from a light being shined in my eyes, but they might as well be speaking ancient Babylonian when asking me my name. Meanwhile a different (thankfully since surgically fixed) problem would make me pass out at about 80% of the pain level of my worst migraine pain.
I don’t really think any analog scale works for pain management… at least in my experience… It’s more a set of conditionals… - Can I physically leave my bed without assistance? - Can I sleep without taking opiates? - Can I function without taking opiates? - Once medicated (usually prescribed weed, but sometimes opiates) can I function or do I need to relax? - is the medication working? I don’t really know any time I can ignore my pain btw…
As someone with Lupus/PSA I have heard it all from people when disclosing. People just don't care to hear it, unless they can judge what you did to cause it, badger you on why you won't try their magic diet to "cure" it, or tell you why what you are going through isn't an "excuse", or some other toxic-positivity nonsense.
@@dana102083someone just told you they're tired of hearing about it, so you told them about it again. If you haven't learned by now, then today you get to learn that giving unsolicited or expressly refused advice is rude. How do you know they're not already following or have tried the diet you speak of? And to top it off, you just say, "cheers", as if what you just said was cute. I hope no one ever treats you as obnoxiously as you just treated OP. Stop doing that sort of thing, seriously. Also, I don't read replies. Get better soon.
@@dana102083 I was diagnosed at 27 at the very height of my being healthy prime of my life really. My mostly vegan diet, by all measures was excellent. My BMI was Excellent. My lifestyle and exercise ruetine were on point, and I was in the best cardiovascular shape of my life. As a mere mortal (who didn't have access to infinite money, a personal trainer, chef, and had to work), there really wasn't more I could reasonably be doing, but I got sick anyways. It just doesn't "always get better if you would just do "x". Going Keto, or paleo, or carnivore won't "fix" me. Nor will cutting out nightshades, gluten, or soy. I can be doing everything right, and I could still even get worse. These days, more than a decade later, I do the best I can with what I have. I will trust my medical team over someone with the "secret" knowledge that doctors "don't want you to know".
I don’t have lupus, but I do have chronic illnesses (yes, plural) and I can’t count the number of times people have offered unsolicited advice and tried to tell me what I need to do to cure myself. All the diets, exercises, miracle lotions, potions and cures, endlessly suggested by people who know nothing and were never asked for their input. Why do people think we haven’t already tried everything? Why do people think we want their input? People don’t understand or care to understand that we’ve found the things that work for us, there is no cure, we are doing the absolute best we can in any moment and we didn’t disclose our illness just so they could give us their two cents?
Yup I remember when Lady Gaga came out and for a moment it seemed raising awareness would improve things, but no. Now lots of people have heard of fibromyalgia, but they have completely backwards ideas about what it is and doctors are definitely not immune. I get accused of faking constantly still but much worse are the ones who "believe" me and then try to take me off all my meds and put me on an antidepressant because "fibromyalgia is just trauma and you need to deal with your trauma" like I haven't been in therapy for 6yrs longer than I've had this condition. Currently fighting accusations I'm faking in divorce proceedings...it never ends 😔
WTF I thought that they worked out what causes the pain in fibro and no one suggested that it was caused by trauma. I do know that there is an antidepressant that seems to help some people but that is a nice bonus, not because they think that fibro is caused by depression.
@@amandamandamands yeah they "figure it out" every couple years with a crappy study. One found nearly all women with fibro had been SA or harassed (no control group) and another found just over a third had extra capillaries in their hands (less than 20 people were in the study and they skewed older.) It tends to be based on the myths that have formed. We do know how it works though, the fascia becomes stiff and sticky and restricts movement causing pain. It's also probable that we have more pain sensing nerves in the fascia. Unfortunately it's only recently the medical community has accepted that the fascia is a functional organ and not just "scaffolding and stuffing" and the research is being done well now so will take some time. Plus there's the resistance of the medical community to admitting mistakes to overcome which will take even longer. The discovery started with physical therapists and the development of a technique called myofacial release which you can now find a trained therapist in nearly everywhere. I still have plenty of pain and difficulty, use a power wheelchair now and was a dancer 20yrs ago, but it's taken me from flares confining me to bed for months to being able to drive almost every day. I've been going for 6years now.
@@aprildawnsunshine4326 I have noticed that there is always resistance when finding out that a diagnosis that had been a kind of well you are complaining so here is a label for you is found to have validity and an actual medical reason behind it. Saw the same thing with chronic fatigue and for mental health BPD and other personality disorders. It takes so long for people to get on board that there is a real thing going on and these people aren't just faking it for attention.
I have never told any doctor or any person other than those very close to me in my life about my diagnosis of fibromyalgia, only because of the negative association. I have Ehlers-Danlos syndrome, which explains a lot of things, thankfully. But the stigma is so bad that even I avoid talking about it because I don't want to be perceived as faking.
@@aprildawnsunshine4326”nearly all women in the study had been SAed or harassed in the study” is especially heinous because nearly all women PERIOD have been SAed or harassed
It took me 5 years to get any medical professional to believe I was having life altering symptoms. 5 years. When a Dr finally decided to shut me up by running some tests, they were surprised that I was indeed in great pain, and disabled. Now I finally have good medical team who both listens to and believes me, and pursues proper diagnostics and treatment. Welcome to the US
Been dismissed by doctors for years for my chronic illness. It cost me jobs and educational opportunities. For years I was told that it was normal because I was a woman and that I had to just live it. You have no idea how awful it feels to be told your medical condition is normal for a woman. I've been self managing for decades and it only sometimes works. My overall solution is to avoid people when the condition worsens. Women need to be taken more seriously for their health conditions. Just because my pain is low today doesn't mean that it is that low all of the time. We are not faking. We just want to be believed. Thank you for being awesome and reminding the world that chronic illnesses look differently for different people. It doesn't mean that you are not to be believed.
Went to ER with double vision, doctor said my difficulty was subjective therefore not really an identifiable issue. After leaving, and contacting other doctors. found out I had the first symptoms of Myasthenia Gravis, and it could be seen given the incorrect alignment of my eyes. Long story short, it is hard to be unbelieved.
@@jennifers5560 Yes-- everyone's vision is "subjective". What a useless, uncaring attitude. If your vision changes in a way that is worrying, it's vital to try to get it looked seriously.
It's so subjective that I haven't realised that other people don't see double untill I was a teen (two eyes and two images - it made sense in my head). I tried to get help for it for years (while it was impacting my education because I couldn't read without horrible migraines) and had the chief of pediatric ophthalmology ward tell me it must be psychological when they couldn't explain my condition during a diagnostic stay. When that doctor who's meant to help children jumped straight to medical gaslighting, I should have known it won't get better from there. I still don't know why my vision is broken, but I also don't have the energy to beg for answers because I have to fight for help for ME/CFS and POTS (and who knows what else)
I’ve lost most of my hearing in one ear because I was misdiagnosed at urgent care and not believed about my serious hearing loss. The infection did permanent hearing loss. I’m lucky enough that some of my hearing is able to be corrected with hearing aids but sadly it’ll never be perfect. My job requires me to hear as a key component. It makes me so angry.
Per my doctor: Endometriosis can cause adhesions so strong that they end up stabilizing and your body adapts around them and they stop hurting- hence sometimes people can think they’re “cured.” And if you feel better I suppose it may as well be true… but there are so many variations of it and it isn’t well understood, feeling better doesn’t mean you aren’t being impacted. Believe yourself and follow up if symptoms bother you. The average diagnosis time is still about 9 years.
I’m convinced this happened to me. I used to get such debilitating pain that I couldn’t walk. My pain improved but I had other weird symptoms that eventually got soft-diagnosed as endo, but I kept gaslighting myself into delaying surgery because it “wasn’t that bed.” When I finally got the surgery, my endo was pretty serious (probably late stage 3) and I definitely needed it, even though I had convinced myself I was “fine.”
I would like to thank Jessica for the editing acrobatics it took to create this video with the many different Jessica voices that conveyed different persona that play a part in judging people with chronic illness. This was a fabulous video and thank you for speaking to this important subject!
I do exactly what you said about the pain thing. I have chronic pain in general and in my own head i've learned to downplay in such a way that it allows me to function most of the time even when very bad. Due to nasty side effects for some medical treatment, i had a 5 week long period. So bad I ended up in A&E and having to take 2 different blood clotting meds. When i was in the room, I was explaining it was very painful, and they did the 1-10 scale and so I say it's a 9. They seem shocked, as I was sitting there like normal, completely able to talk to them. My flatmate was with me, and he stopped them when they asked are you sure, pointed out I have chronic pain and in order to you know, live, I'm very very good at masking. So he explained all of the signs of pain he saw in me when at home and comfortable, and they finally did examinations and gave me treatment. I feel like people who dono't have chronic pain, just don't understand how much we work to show we aren't in pain. It becomes a habit that is incredibly tough to break, so having that support from someone close to you is incredibly helpful.
This is why support is so important! I was in the ER (usa a&e) with severe leg pain and unable to walk. I happened to be laughing at a joke a nurse made when the doctor walked in and said I must be faking because I'm smiling. There were a few nurses in there, they couldn't get the IV going, and they stood up for me thankfully but if not I'm pretty sure he was going to kick me out and I couldn't move my legs without blinding pain
Yep. I've been told I'd be screaming if I "was actually in that much pain" when my migraine forces me to the ER due to severe nausea and dehydration. Yeah, can't imagine why I'm not screaming with a noise sensitive migraine. Tried to kick me out, then got mad when I couldn't produce a urine sample. I got an IV after that (I think to punish me with a needle to get blood for testing to "prove" I was fine), except it took 4 nurses to get an IV in. They had to get the smallest needle and it still was a challenge.
@@aprildawnsunshine4326 yep, like I've gotten very good at hiding symptoms of pain, kinda tends to happen when you live with something for years. I had a doc ignore my horrific cramps that were causing me to pass out any time I moved anything that wasn't my head, arms and toes so my doc (my partner called the emergency line) told me to go to the ER with instructions to have them call her. My partner had to call an ambulance to get me there because she had no way of getting me to the car, but because I was lucid when I wasn't moving he didn't think I was in pain. Well that and "Cramps are painless".
When my husband and I got married his medical coverage at the time said I needed to request and submit my medical records from my doctors. It was a hassle but I did what was needed. So I got to look at my records. I stopped seeing one doctor as soon as I read all the notes he had taken. He literally said in my records I was faking symptoms. There were test results that came back, tests that were ordered for me, that I was never told there might be issues. I had something for four years before another doctor caught it on blood work and said x might be a problem so they ran another test and went, yes you have x. Lets work on this. But my old doctor just brushed off my concerns and complaints. I was also told by him, many, many times that it was just due to it being "that time of month" and nothing to be done as it would pass in a few days. When I was seeing him I really thought that maybe a lot of things were just in my head. Because obviously the person who was trained would know better.
My first OB-GYN during my pregnancy wrote nasty comments in my chart, too. It was very upsetting. She also never told me that I had fibroids. And when I got diagnosed with gestational diabetes during the process of switching OB-GYNs, she didn't bother to even tell me and didn't give me a prescription for a blood glucose test kit. At least she referred me to a specialist, but they were clearly not expecting to be breaking the news of my diagnosis and scrambling to get me the necessary equipment.
As someone with bipolar disorder, ADHD and PTSD, and clearly only one trauma since everyone knows you can only have just one (kidding ofc), and as an advocate for people with mental health issues for 14+ years, I have obviously never been accused of lying about it for attention, and have no idea what you are talking about 😑😅❤️🫠 Jokes aside, thank you for bringing attention to this in a kind and responsible (and funny) way, it is so needed, especially from someone who understands and knows what it's like. It brings more reason and kindness into this crazy world of ours 😌❤️💕✨🍀
I want to say, I really appreciate what you said near the end there. About the effect of poverty on chronic conditions. I'm homeless and live in my car. And I'm diabetic. When I'm able to use a kitchen to cook healthy foods (such as today, I'm thankfully at friends' house) I do better. Luckily, it's not bad enough to require insulin. But when I was diagnosed about a year ago, I was living with some friends and the initial improvement actually impressed my doctor. She even acknowledged that I would probably be able to get off the one medication I'm on (Metformin.) But I had to go back to car-dwelling (as planned, my friends really didn't have space for me) and it was hard. Ready-made foods are less healthy AND more expensive than whole-food ingredients.
Fellow chronically ill vehicle dweller. It might be worth it to invest in a small grill and a cooler if you can. Having the resources is good in case you do have the energy to cook something
I’m FtM, was diagnosed at 16 with endometriosis, and started developing symptoms of PCOS (but not yet diagnosed) at 20. My weight fluctuates a lot because some days I literally cannot get out of bed, the pain is so bad. I’ve been told HRT treatment will help (which is awesome because it will also help my medical transition). But I have yet to hear back on if my insurance has approved this… Same insurance told me they will only pay for vocal therapy if I was not diagnosed with autism. I don’t tend to comment on videos, because replies scare me, but seriously, thank you Jessica. This really helped. I can tell from all the other comments on this video that it’s helping to validate a lot of other people with chronic illnesses as well.
17:32 In the case of Selena Gomez, I think part of her "weight-gain" was her body maturing. When she first started in Wizards of Waverly Place, she would've been only 15 and it ended when she was 19. I got taller and bigger only when I was 19 or so. I think with celebrities there's an expectation for them to maintain their body type/shape well into their 30s and when she was in WoW she was fairly skinny (like a typical teen). Her now, (to be clear I think she still looks fantastic) she looks like an adult.
Ages ago, before I knew about my chronic conditions, I was sick and running a fever. It was a high fever - over 101 F. I remember some jerk telling me I couldn't be sick, I had such a healthy glow. I yelled at him that what he called a 'healthy glow' was the flush from my fever. People need to learn to mind their own business. Thank you for this, Jessica!
I suspect I have endo, and I am fed up of having my pain dismissed (8.5 years and counting). I can’t even get them to investigate properly. It’s hard to even talk about this to doctors in the first place as a trans man. 🙃
That sucks man.😢 I've had endo too. It can be extremely difficult to get laparoscopies to fix the damage it courses; even if you can get onto a hormone treatment that will make it go inactive. Such as testosterone or the pill. Ermmm I don't know if this is something you'd considered, cus I don't know about you or your pain; but I found that my hysterectomy reduced my pain more than anything. Had 2 previous surgeries with 10 year gaps, (cus even cis it's hard to get); with it always growing back, and crippling me while trying to get them to do it again. The standard recommendation is for 6-7 repeated surgeries every 5 years to tackle regrowth, if hormones alone can't control it. Honestly I wish I'd asked for them to remove my uterus 20 years ago. The laparoscopies would take my pain down from 10 to 7, with it lasting a year or so. But this has gone from 10 to 4, with a 5% chance of regrowing. Might be worth thinking about if hormone therapy isn't helping much, as it can sometimes be easier for guys to get. A couple of my guy friends were around a year or so faster on the lists than me this way. Really sorry if I'm over stepping, it's just this disease has made me a full time wheelchair user, and too sick to work. Feel free to ignore me if this isn't for you. 🙂 Hope you have a nice day.
@@vickymc9695 I’ve been fighting for a hysterectomy for a few years, and I’m currently (finally) waiting for an appointment with a consultant gynaecologist to hopefully get approved, and then onto the waiting list for actual surgery, or at the very least any tests they need doing beforehand. Getting even this close has been almost impossible within the nhs, and has involved several layers of approval, waiting, referring on, official complaints etc. If I wasn’t on testosterone I wouldn’t be able to cope. Having periods was traumatic both emotionally and physically. I’m now almost 8 years on T, I suspect I’ll be at minimum 9 years on it when/if I finally get my hysto, but I’m hopeful it will solve most of my issues, or at the very least they see irrefutable evidence that I’m not imagining things and that they should have listened and investigated. The thought of having to endure this agony almost constantly forever is deeply frightening. My latest referral for the pain was discharged without even meeting me, with their “impression” being that it’s functional pain and that I should just learn to deal with it. Zero further investigation. Again. Told to keep taking pain meds (by which they mean paracetamol, despite me telling them none have ever helped, even very strong ones). I’m sorry you’ve had so much trouble with endo and getting treatment for it. The standard of care from diagnosis to treatment is appalling and so obviously steeped in medical misogyny.
the online communities can be difficult to navigate but it is worth looking for lists of endo-affirming doctors in your state if you haven’t already- I wish I had them to hand but there are compiled lists of docs who have been helpful (and the deep difficulty of having the condition as a man must be so ironically frustrating- all good vibes and good luck to you)
Jessica! I wanted to let you know that my professor linked one of your videos in my college Human Sexuality class. It was so surprising and lovely to see someone I have watched for years involved in my class module. She linked the "My wife is not an angel" video. It made my heart warm to know everyone in my class was watching the video, and hopefully coming away with a better understanding of interabled relationships. ❤
I have type 1 diabetes and I just wanted to slightly clarify what you said about the relationship between diabetes and diet. It's true that diet choices can impact your chances of getting type 2 diabetes, but genetics play a huge role! And type 1 is an autoimmune disease, so what you eat actually plays zero role in whether you get it! It can be upsetting when people just assume bad diet = diabetes because it contributes to this narrative that people with diabetes deserve what they got (not saying you were saying that, but it's a popular narrative). That's why I actually appreciate celebrities like Nick Jonas being super glamorously fit (even if it's a little unrealistic for most people), because it gives people a different image of diabetes than the usual overweight person with an amputated leg
And there can be weird exceptions to even the seemingly obvious type 1 and 2 groups. I worked with a lady, mid 50's that had diabetes. She'd said it was type 2 and I didn't think much of it. Then a few months later she said something about having had diabetes since her 20's and I responded, "Whoa whoa whoa. How have you had type 2 diabetes since your _20's?"_ Turns out that she'd been in an extreme accident that left her with several fused vertebrae, plates in several major bones, and missing 75% of her pancreas. So she technically had type 2 diabetes for reasons having nothing to do with her weight, metabolism or diet. I'd guarantee that she'd experienced negative remarks or discrimination due to having the "it's-your-own-fault" diabetes when it was clearly nothing of her own doing that lead to it. One of many millions of examples of why to not make assumptions about people's health.
@@CorwinFound As a diabetic of almost 20 years myself - I was mid-20's when I got diagnosed - it was only recently that I found out that I am actually type 1! I was categorised as type 2 for all that time - type 2b, to be exact, so the main problem was not insulin production but absorption. I have a genetic predisposition (on both parents' sides) and am admittedly obese, so type 2 did make sense. Never heard of LADA (late onset autoimmune diabetes in the adult) in all those years... So there are a lot of things "the public" doesn't know and even those directly affected might not know even for a rather well-studied disease like diabetes, not to speak of conditions like endometriosis which have only begun to be taken seriously recently. I don't know why it's so hard to believe people about what they experience and not to judge 😮💨.
@@CorwinFoundthis! I was diagnosed with type 2 about 3 years ago. I have SLE -Lupus with multiple organ involvement, which includes my pancreas. Hence. I also have an odd form of insulin resistance. If ONE more person tries to talk to me about what to and what not to eat-I may literally go off on them. I am not obese. I have a Primary, who is an Internal Medicine Dr, Rheumatologist, Neurologist, Gastroenterologist, AND a Nutritionist. I promise I do not need any other opinions/advice. It’s exhausting…
the amount of time I had DOCTORS and NURSES tell me "but you don't look diabetic". My dude. I was one year old when I got diabetes, and that is written on my chart. What exactly am I supposed to look like...
14:55 - I hope House is still a relevant reference because that’s the gif I sent everyone after my latest panel of tests confirmed that my exhaustion/pain/etc is not caused by Lupus.
My mum dreaded going to the doctors for years due to her issues being dismissed. She was told she had abnormal periods when she'd been bleeding for two months straight at one point. After dismissing her lord knows how many times, they finally sent her to a specialist who (what felt like) instantly told her she has cancer and needed treatment as soon as possible. Unfortunately they caught it too late. But it makes me wonder every day would I still have my mum if the GP didn't just tell her all of her signs were just "menopause" or her "period". If you feel like there is something wrong with your body advocate for it. Don't let people question you on how your body is feeling.
My tip is always try and take a guy into the room with you, just to nod when you're talking. Doctor are more likely to believe your pain and symptoms if you've accompanied by a bloke 🤦. Other tip is to dress up. Neat hair, smart clothes, makeup if you use it. The halo effect makes them more likely to listen to what you say, and follow through with the blinking care pathway they're met to. It sucks to have to attend every hospital appointment looking like your going to a job interview but it does work.
Yes! My mother gets all dressed up, takes her luxury handbag and wears a Rolex watch to the doctors for this exact purpose. Unfortunately they dont allow a second person in the consulatation room since Covid so my dad couldnt go in and nod along anymore.
Dressing up isn’t always the best option though - I’ve been told ”You can’t be in as much pain as you’re claiming if you’re able to dress up/wear make up/dye your hair” etc… And also that I look ”too happy”, ”too relaxed” etc. to be in pain.
I ALWAYS wear expensive jewelry to the doctors, Emergency Room, etc. This also helps when you have to strip down & get in a hospital gown. They can still see the expensive (but subtle) jewelry. It makes a HUGE difference in whether they believe my pain or not. And whether they give me pain medication. Because poor people only have pain that is provable by tests & evidence because they're addicts who are only after pain meds. 🙄😒
Another important aspect of this issue is that some people "translate" their attitudes about celebrities to common people. Ignorant comments about Selena's body may not be super hurtful in a vacuum (her manager, probably, reads them) but they build a culture in which it's acceptable to say such things. Tomorrow, a cashier Wendy will hear it and she's less equipped to deal with public negativity. Today, you tell Bella Hadid the Lyme disease isn't real. Tomorrow, you tell an old lady at the bus stop it isn't.
Plus it's more than just the celebrity reading those ignorant comments. Just because they are technically directed at say Selena doesn't mean there aren't many other people in a similar situation reading it and be hurt by it, even if you'd never say it to a 'normal person' in real life.
@@sarahgowen3692 yep. I've had people try and get me to join in on mocking [insert celebrity I've usually never heard of] "for pretending that [condition I personally have] is real". Yeah, that gets real awkward real fast. Because, as long as I am safe from physical retaliation, I have no shame.
@@waffles3629 I can't say I relate - obviously, me, an able-bodied person jumping on the conversation would be weird - but, I've had many people try to get me to join mocking a visibly queer celebrity not knowing I'm queer.
I have had horrible migraines since I was 11. A manager I work with has been telling people he thinks they aren’t real. It sucks having chronic pain, people can’t see it, I can’t prove it unless I want to bring in 30 years of medical paperwork. I hate having to tell people about it. But also having to defend myself is utterly absurd and deeply hurtful. On top of being in pain all the time I have to deal with people who accuse me of making it up.
As someone with surgically diagnosed endo, the “pain is a part of being a woman” was so normalised to me, and still affect me even now. Despite getting surgery, I still have seemingly random abdominal pain (much milder than before but still uncomfortable) and it’s so hard to understand what’s “normal pain” or not. I’m glad I moved to a country that seems to take women’s pain more seriously (one of the few things that is actually “progressive” in South Korea) but it’s still a very real issue. Also, please, if your period pain is causing you to vomit or faint, please please see a doctor and look into a diagnosis and don’t act like it’s “normal.” It is not and not only does it affect you, but “normalising” debilitating pain can actually be detrimental to awareness of chronic pain. I delayed diagnosis for endo because I was convinced my pain was “normal” (it was not) because “at least I haven’t vomited from the pain…”
Thank you for making this video. It‘s never okay to comment on people‘s bodies without their consent especially when shaming (commenting negative). It doesn‘t matter how famous you are or what gender you have.
My mother had Parkinson’s disease. She was diagnosed when she was 36 years old. I was 4. I remember as a kid never staying at family functions for long, once her tremors started we would leave. She hid her disease for much of my younger years. But later she began speaking out, when I was 13 she even went on an American day time talk show along with her Doctor who was a leading expert of Parkinson’s. When I was in high school I was taking an Anatomy/physiology class and she came in and talked to the classes each hour about Parkinson’s. For years after students who were taking that course would see me and ask how my mom was doing. When Micheal J Fox came out with his diagnosis, it really changed things. My mom was always open to talking about her disease but it took a long time for her to get there. But even then she hid just how difficult her day to day (sometimes hour to hour) life was. I was her full time care giver later and being her voice was at times a up hill battle. Being a woman as well making my voice heard was a challenge. Fortunately for much of my mom’s time when dealing with this disease my father was always there as her advocate and making sure her voice was heard. No one can know what is going on with someone behind closed doors. As the saying goes you can’t understand until you’ve walked a mile in someone else’s shoes. Give others the grace you would ask for yourself. Thank you Jessica for talking about this and also sharing some of your own experiences and struggles. ❤
Thank you so much for posting this. I have Chronic Lyme and Bartonella. Lyme and tick disease are not just spread my ticks but also spiders, fleas, and mosquitoes. Birds are the biggest spreaders through migration- ticks attach to them and drop off when bloated. Testing is inaccurate and outdated.
Cruelty infuriates me! Thank you for another video on this topic, Jessica! I was diagnosed with lupus 45 years ago and it meant a lot to me to see Selena Gomez talk about it! And she’s positively brilliant in Only Murders in the Building!
Any time I try to talk to my dad about the symptoms I have, and that I want to be tested for things (like Autism, pots, eds) he accuses me of self diagnosing. And in the case of autism, literally said it’s offensive to my brother who is diagnosed. All I wanted to do was talk to him about whats going on with my life, the things i have many symptoms of… I cant even talk to him about anything. I’ve been struggling with chronic pain and dizziness and other things for a while, and I’ve tried so hard to get my doctor to do something. I on,y recently learned the symptoms of pots, and I have a lot of them, like heart racing when i lie down, then being dizzy when I get back up, which is the main one that has caused me to want to be tested for it.
As someone with POTS you are valid in questioning whether you have had it. I made the doctor give me every diagnostic test wven after my diagnosis because I wanted my ex and other doctors to stop questioning if I really have it. I knew I had it and asked my gp for a referal to a specialist for it and I was right. You are not insulting anyone by doing this. We all need to be our own advocates.
@@Lady_dromeda Yeah I know that it hurts when family disappoints us. 😞 Hugs. Hopefully you can find a support system other thn him that will loft you up.
I’d just like to thank you for how amazing the closed captions are. I can tell you did actually put effort into creating them or used money to hire somebody to do it for you. So many creators, even with millions of subscribers (Mr. Beast and many beauty TH-camr) don’t do that
Legit even if Jameela Jamil did have Munchausen's, that is a real illness in and of itself, and people with it often do end up actually ill from unnecessary medical procedures and/or harming themselves in order to induce symptoms. Munchausen's is more tragic than often portrayed - I just read a case report of an older man who developed it following the sudden death of his son. We should always default to compassion.
just put in my two weeks at my job after (multiple other things but this definitely was part of it) a coworker INSISTED all my medical issues were fake because I mentioned my doctor "thinks I possibly have fibromyalgia but the diagnosis process is too expensive to look into right now." one singular undiagnosed thing I mentioned in a one off conversation was enough to now invalidate all my actual written on paper diagnoses. Yay.
I always appreciate you acknowledging the existence of nuance because it’s often dismissed when a solution works for one person - there are too many factors to consider when trying to apply what works for one person onto another, especially when their circumstances don’t allow said solution to be as attainable.
THANK YOU for putting the message out there! I have had so many issues with body awareness. Four years ago an emergency back surgery severely damaged my spinal cord which resulted in many chronic issues - including needing a wheelchair and a lot of pain medication. And these medications caused me to gain a lot of weight. The judgement I have received since then - also from medical professionals - is truly, truly humbling. And I was a nurse before the operation myself. For years doctors more or less ignored my back pain. It’s „normal“ for nurses to have back pain. Well, even as it is - there could still be severe medical issues like for me. When it was finally discovered is was too late and I had to undergo a very difficult emergency surgery. The outcome could have been so much better if it would have been diagnosed earlier. I just wish for people to take pain seriously - and especially for medical professionals.
I'm so sorry to hear about your experiences- a similar thing happened to me with spine issues that was dismissed by doctors as back pain. I ended up becoming partially paralysed and a full time wheelchair user. There were treatments that could have potentially prevented it but they didn't investigate properly. I've also gained a bunch of weight too ❤
It's also physically more difficult to get plenty of exercise if you can't walk. I think about that every time I see a wheelchair user getting fat-shamed.
@@ettinakitten5047 definitely, I've been trying to get more exersise as a powerchair user - the closest wheelchair acsessible gym to me is almost an hour away on public transport, and I live in London 😭
Can we take a minute to adore how beautiful all the outfit and hair styles are that she put in here?! Must have taken forever, especially the editing! I am stunned! She is stunning ❤️
You talking about Ehlers Danlos syndrome helped a good friend of mine get diagnosed. Neither of us was familiar with it beforehand, and having a name and a description suddenly made the list of weird and seemingly random symptoms into a "wait a minute..." moment.
I had that moment when I read up on lupus. I'm currently doing more research, but I should probably see a doctor...I keep feeling worse no matter what I do
YEARS ago, as a kid, i remember a lot of people at my school gossiping about MJ and how he got a lot of plastic surgery and all the usual gossipy nonsense around that. It was only years later that I came to know that a big reason for all the makeup etc, (and iirc his song "black of white") was his struggle with vitiligo. the crazy part was, imo, one of my classmates HAD vitiligo and he (like MJ) had otherwise dark skin (vitiligo is more obvious on people with darker skin). We all knew what it was, or at least experience with it.
The first time I can remember dealing with how dismissive people are of pain if they can't see what's wrong, I was probably 12 or 13 and I'd been experiencing what I still believe is a tendon issue. The doctor took X-rays, told me my bones looked good, and sent me home. Good to know that bones are the only part of the human body that can be responsible for pain.
Ugh. I finally got xrays around 19 after having knee pain from probably age 8, and was diagnosed with osteoarthritis in my knee and the best thing I ever did was see a physioterapist. With pain issues that don't seem to be near an organ, I'll see my physiotherapist before I'll bother with a doctor, doc might give me a diagnosis but never ever have I gotten good pain or symptom management about joints from a doctor. I'm just glad my body responds well to physio, xrays in my 30s showed the knee structure hadn't gotten worse.
I tore something in my arm, like literal audible sound, but xrays showed nothing broken so physio told me I was fine. 2yrs later I literally have no strength in that arm with an overhand grip - it's fricked 😂 (And yes, I have to laugh about it because otherwise I'd be crying)
If we need proof that we humans do not actually have control over our own health, weight and general appearance, this is it. These celebrities have money, time resources and motivation (their appearance is literally tied to their ability to be hired and do their job) and even they cannot prevent cancer, weight gain, aging, chronic illness, etc. So can we get off each other's backs about all these things that are not under our control EVEN when we have access to all the best treatments and preventative care?
This reminds me of a time where I was really struggling with my depression and there was just so much content about "high functioning depression". It just made me more sad that all the attention seemed to go to these people who seemingly still managed to do all these things while suffering from depression and I could barely do the day minimum (basic hygiene, clothes and a meal, preferably something very filling because I had energy only for one meal, if possible cook for two so I had leftovers the next day).
17:50 Bothers me too!! I am hanging on your lips instead of going to sleep rn. I am on a clock, and need to be somewhere on time tomorrow...but I just love to hear someone say, what I want to say all the time. It's so so great that you stand up for all of these celebs.
I really appreciate that you talked about body shaming. It's something I've dealt with frequently after an anti-depressant medication caused me to gain more than 5 stone in 7 months. Even doctors treat me differently and blame my physical health issues on weight gain, despite the fact that my health was bad long before the weight gain (and I now finally have a diagnosis of EDS!)
Same here, I didn’t have weight issues until I was on antidepressants, and now every time I see new doctors, I brace for when they tell me I’m kinda overweight and give me a lecture about diet and exercise.
We live our lives with our "chronic illness", and we can have good days and we can have "This is too hard, I'm not able to do simple things to take care of me." days. We are unique and our days are often spent throwing out the schedule. That's okay. Chronic illness can't read the stupid schedule! We are okay anyway. God bless you, Jessica. I love your videos! Bonnie
I'm from PA (Lyme capital of the world) and have had Lyme ~3 times. My brother got it once and it almost killed him. Another person I know got it once and it destroyed her central nervous system, completely and permanently effecting her life. Another was paralyzed. It absolutely is a mysterious and unique infection. Check for ticks always after being in grass or woods
Absolutely. I’ve been treating my late stage lyme for the last 8 years I had been a wheelchair user 5 years, now on crutches, had seizures, debilitating fatique, bells palsy at times, tics, paraestesias, and a myriad of cognitive issues. Also you might not remember a tick, but if you tend to have a multiple unexplained health issues, maybe look into it!
@@eliskakomarkova such a good point, also I'm incredibly sorry you've had to go through all that!! I'm a microbiologist and of course have a personal interest in Lyme.... Did you know that we developed an effective vaccine for Lyme but don't produce it anymore bc it didn't sell well enough? (In case youre in the mood to feel angry 😂😭)
Lovely Jessica, what a wonderful video. The only thing better than one Jessica is three Jessicas! I have a goddaughter who recently got a lupus diagnosis, and hearing about her fight to cope with a malady that seems to change every day and has treatments but no cure is disheartening, to say the least. At least the people in her life seem to have believed her that something was wrong. How terrible to be suffering and to have people think that you’re just malingering. And yes, _House_ references will always be relevant.
Love your videos, and I love how you covered this real issue with the conversations around celebrity health and privacy. Also that green dress or top with the sleeves is STUNNING! I would love a spring closet update.
My favorite was when my doctor totally ignored my obvious discomfort over a medication she wanted to prescribe and then proceeded to insist upon the medication until i finally said yes so that she would let me leave. I never picked up or used said medication and have since found a new doctor who doesn’t try to brow beat me into taking anti-psychotics for mild depression.
I have suffered from problems around my period since my late teens. It got worse over the years. When I was too sick to go to work for 2-3 days every month I finally looked for professional help. The first thing I tried helped great for 6 months and then gradually worked less and less. In January this year my OBGYN told me I was listening into myself too much and that only ignoring my symptoms would help after the first pill made things much worse. Basically she told me it was rather psychological. Fortunately found a different professional who was willing to try something else which is working so far.
I've had migraines since I was a kid that got suddenly worse earlier this year withouf any cause we've been able to determine. I've had to leave work on disability while I work to find a treatment and whenever I'm having a good day and decide to go out, I'm afraid someone at work will see me and think I've been faking. I've also gained weight due to having to spend so much time laying in a dark room while dealing with a migraine and I'm very self-conscious about it. Thank you for talking about this.
Love your videos Jessica! I have lupus, endometriosis and Raynauds which is quite challenging on top of my adhd and autism diagnoses - quite a few people I know ask me about Selena Gomez and the weight thing just makes me so mad when they mention it. I usually get the comments “but your weight doesn’t change like hers” and I have to remind them that one line of treatment for lupus is one line of treatment - whatever Selena is on is probably different to me. The fact she’s in the states and I’m in the uk will also make a difference to what meds are available too. Selena has been good for getting information out there but I remind people that these celebrities do in fact have money and easier access to healthcare unlike us regular folk. Thank you so much for all the information in this video - I’ve really enjoyed watching this one and probs one of my favourite videos you’ve done! Love all the outfits and the 3 Jessica’s they made me chuckle! ❤
13:40 lyme disease awareness is SUPER important! ticks are a HUGE cause of lyme disease, especially here in the US, but not ALL ticks can cause it. it's mainly deer ticks, which are smaller than dog ticks and can be harder to spot, but not impossible. it's easy to keep them away though! just wear long pants and socks if you're in tall grass, and check your skin and hair for bugs after you leave the grass--or you can just take a long thorough shower immediately after and scrub the hell out of your scalp when you shampoo! source: my first job as a teenager was in my home county's parks and rec dept, specifically in conservation, so i learned a lot about lyme and ticks and had to flick them off myself a few times.
this is especially important considering that the ongoing SARS-CoV-2 pandemic is making a lot more people chronically ill (even as they downplay it as us being lazy or not wanting to work, in hopes that we'll get back to the office and keep making money for the shareholders). *just a PSA that if you are chronically ill--or if you don't want to become chronically ill--one of the most powerful ways to protect yourself is to keep or resume masking (N95 or better), cleaning the air with HEPA/Corsi-Rosenthal boxes, and staying up to date with your boosters.*
YES!!! Thank you for saying this. It’s so wild to see even other disabled people, including some who consider themselves activists, ignoring these facts!
When I went into the ER with suspected appendicitis, the doctors seemed shocked with it actually was. Like I was faking the pain / got it mixed up with period pain!
I've been dealing with scoliosis since I was very small and had a surgery to correct it once it got too severe during the pandemic. Ever since then, I've had aggressive back pain that leaves me bedridden for hours on end, tire easily, have difficulty breathing and struggle to balance myself (I trip and fall with ease now). My mom has been taking me to the same doctor that did my surgery for years and he's always brushed off my complaints with simply "you need to push yourself more" and the like. Finally got my mom to take me to a new specialist and we found out that apparently, my previous doctor half-assed my surgery and the curve in my spine is STILL growing; it just that it's a tilt rather than the two curves I used to have. Presumably it's putting pressure on my lungs as well, so that's just lovely. Took FOUR years to find out, which is honestly ridiculous. Luckily the new specialist has referred us to another group of doctors so we can get a second opinion (he doesn't want to rush into another surgery without knowing for certain that I need it) so things are looking up. But honestly, it's so ridiculous that a guy who's been treating me for YEARS would brush me off like that. Like, what the heck- we literally pay him to make sure that my spine is doing alright????
16:57 The number of times I've been told: "you can't possibly be autistic, you look phenomenal" (as if autism isn't the very reason Makeup became one of my special interests/fixations for such a LONG time, like I'm gonna look great a lot of the time) or "you don't have an autoimmune disease, you're so put together and not complaining about physical pain" (lol I complained the entire way there, and if I complain they call me a buzzkill. 🙃) Like... Goddamn it people, EMPATHY.
Being believed is a whole side topic on another youtube channel I follow. The channel is about leaving Mormonism but one member has endo and gives advice about bringing a spouse, parent, or male friend/relative to advocate for you to force the doctor to take you seriously.
Both Jessicas look gorgeous! My goodness what a wardrobe!!! Telling people their bodies are not meeting your standard is ridiculous. It's not punching up, it's just mean.
I was told to rest and take Tylenol and later got an antibiotic. But when the doctor eventually ordered a CT scan, I was held in radiology and quickly sent into emergency surgery 🤷♀️
As someone who works in the mental health sector (with chronic health conditions) professionals not taking people’s pain seriously happens in this industry too- especially for women and as you say present them selves well for appointments- hello social contract! Believe people when they share their pain- whatever context, however you know them. And yes, privilege! Ah! What a wonderful world to believe everyone has the access to and spoons available to be able to have what they need to support their health! Spoon theory and issues of intersectionality are very important! Love your work Jessica!! 😍 PS- love the pep talk at the end ❤❤❤
Not me holding back tears throughout the video but sobbing at the end T_T thank you for all the love, wonderful video as always (and dang looks like it must’ve taken a looottt of effort)
16:41 "Go ahead, ask them" Facts. I had a doctor dismiss the fact that I was in any pain because I was dressed. No, not that I'd changed out of pajamas, that I was wearing clothes. Yeah, I can't imagine why I put clothes on before going outside in the middle of winter, you know besides for the fact it's illegal where I live to be nude in public.
I just saw a documentary on Selena last week and I think she’s pretty great. Body shaming anyone is simply WRONG. Lord knows we do enough damage to ourselves.
Glad you brought up the situation with Princess Kate! I felt bad for her having to go through all that public scrutiny when going through cancer is tough enough! Sometimes I would wonder what kind she might have, but it's also not my business! It's like we forget sometimes that the royal family and other celebrities are still people. I also love what you said at the end about how we only show the "highlight reels" of our lives. I personally like my privacy when it comes to medical things but I know others have their reasons they might want to share, and neither is wrong/bad.
I think part of the issue with Americans being unkind to ill celebrities is that they have access to the best doctors and always get their medications. I think there is a mindset that its not possible to really feel "that bad" when you are so used to seeing you areused to seeing your friends and family unable to get any care at all
see that's the thing. I have Fibro and Chronic Fatigue and literally no one believes me because they only see me on my "good days" that is, days I am able to get out of bed. No one sees me on my bad days because im in too much pain to move. This makes college and work quite hard. And yes, just because Lady Gaga can do it doesnt mean that I am overplaying my pain
I have endometriosis and the amount of bizarre things people have said to me about it is boggling. The main one is to tell me that getting pregnant will cure it because their friend's cousin's wife's whoever had it and it was completely gone when they had a kid. The one that really got me though was a nurse at my medical practice who basically told me that a lot of my problems, especially with pain would be solved by losing weight. I'm on two different contraceptives to try to alleviate the symptoms and I've been roughly the same weight with very little fluctuation for almost 20 years. Somehow, I don't think that's going to be the miracle cure-all you think it is.
THANK YOU so much for taking the high road in the cesspool of internet female body commentary. It is awful and we should all stand up for body neutrality; we all are lucky to have bodies, they all look different, we are allowed to exist in them, take photos in them, like them for ourselves, and just NOT CONSTANTLY BE MICROMANAGED in them. I don't care if my body is 'right' or 'wrong' to anyone else, I just want to be treated with dignity.
2 people in my family as well as myself have lupus. For all 3 of us it also causes major swelling. We’ve all had it on our faces, abdomens, and legs. We’ve had people who were quick to talk about how much weight we gained and then lost it. We know we look larger we don’t need judgemental commentary on it. I’ve always felt terrible for Selena for that.
I had to get checked for endometriosis a while back and I was so nervous, because my doctors office can be a bit sceptical sometimes and luckily I had a new doctor. Initially he said I was too young to have endometriosis BUT later that same day he called to correct himself, saying I should come back because he did some additional research and age wasn’t as relevant as he thought it was. I’m very happy he did, because when I went to check they couldn’t find anything, but the rule of thumb in the Netherlands is “if it sounds like endometriosis we treat it as endometriosis” so they might’ve caught it before anything could grow on my ovaries. I think my doctors were very aware of medical sexism and that awareness meant I was taken seriously every step of the way. It’s so important that people know about it. Medical sexism is one of the scariest things there is and though I’m glad my experience was positive, I shouldn’t have to feel relief because I was believed.
I really enjoyed this video Jessica - it was fun to watch and a clever way of presenting different viewpoints. I don’t really follow celebrities but I have been appalled by the media treatment and speculation about Princess Kate. I don’t envy doctors trying to diagnose patients and work out if patients are lying or telling half truths, because people do not always tell the truth about their symptoms and do try to cheat and manipulate medical systems. On the other hand, I have also been a victim of doctors making assumptions about me because of my appearance and of not being believed when I said my breathing difficulties were not due to anxiety because ‘ you have a long history of medical appointments due to anxiety’. In the latter case, the GP only believed I was not having a panic attack after she gave me medication to treat an asthma attack and it helped! I KNOW what anxiety feels like and how it affects me because I have been struggling with mental illness for most of my life. If I say it isn’t anxiety, how about believing me and looking for another cause of my breathing difficulties?
I don't have a long term chronic illness, but I was temporarily disabled three years ago, and having people not listen to or believe your pain is just awful I had sciatica from piriformis syndrome, and it was the most pain I've ever experienced, even worse than my kidney infection or hysterectomy. I wasn't even able to sit, so I couldn't drive or do almost anything but stay in bed. nobody, not friends, family, or even doctors, NOBODY was listening to my pain. I was particularly upset with my ex for this, because he knew I have a high pain tolerance, a high pain threshold, and I almost never complain about physical pain, so I feel like he of all people should have understood that something was wrong. I was inpatient for a week for mental health at multiple points, and I had to beg the doctors for an xray because I was positive something had to be broken. even once they (almost) properly diagnosed me with sciatica, the physical therapists weren't listening to my pain either. until one woman, thank goodness, listened to me and did a physical exam, and she was like oh, it's piriformis syndrome, you've been doing the wrong stretches 🤦 it took like over half a year to go through all of that, and even longer for the physical therapy to start working, and I still have to stretch sometimes. I already believed people when they said they were in pain or something was wrong, but now I have an even greater understanding of what that can mean to someone, and a greater appreciation for when someone shares their story thank you for the video 💖
I have suffered from anxiety and depression since I was a teenager. I have been over medicated and under medicated for decades. I was in my early 50’s when I was finally properly diagnosed and medicated. It changed my life and made me finally realize that the stress of my job ( Cardiac ICU RN) was contributing to my disease. I cut down my hours and until the pandemic hit was doing very well. I picked up a lot of overtime as we were all in desperate need. I have finally retired but I still have stress dreams. Good luck to everyone out there dealing with one kind of illness or another!
My favorite response to "you don't look sick/disabled" is to say "Well you don't look like an arsehole but we're all wrong sometimes"
Reminds me of the 2000 something brats movie where the guy goes "you don't sound deaf" and she goes "you dont look ignorant"
@meliskoolies that's a 10/10 line honestly
@@meliskoolies having never seen this movie? I love that Bratz went that hard
@@meliskoolieswasn’t it Yasmin who said “you don’t look deaf.” And her male love interest replied, “well you don’t look ignorant”?
Screenshot taken to remember to use this. Thank you.
Took a year for a dr to "HUMOR ME" by sending me to a colleague. Emergency surgery the next month to remove a cyst in my spinal cord. How ridiculous
❤
So many doctors play around with our health, it’s infuriating.
God I hate our medical system so muchhhh
Medical trauma is so real ❤ take care
Could you file a complaint?
The biggest challenge of each medical appointment is to adequately describe the pain without being labeled as drug seeking.
I have a really great pain management doctor (it took years to find him and I've changed to more expensive insurance to stay) but at this point he and I argue about how low my dose is because I keep getting treated poorly by other doctors and anyone else who finds out I take any at all. Currently have a seriously painful back injury and been refusing to raise it because then the gastro doctor blames everything on that. It's lose lose and feels like their real problem is that I'm in pain at all, like not pushing through even when it's bad enough to cause me to pass out or throw up is a moral failure or crime tantamount to embezzling from a charity.
Same with ADHD. 😢
My Dr recently told me that everybody comes in claiming to have ADHD just so they can get stimulants. Or maybe awareness of the symptoms has spread enough so that people are self diagnosing because their problems have been overlooked/dismissed by the medical system.
@@nataliestanchevski4628 not going to lie, the scariest part of asking for ADHD treatment was fear of the stigma and getting that response. I am a pharmacist and I have the scientific proof to back me up that those stigmas and attitudes are bullshit but I still have that fear. I have the paperwork of my diagnosis saved so I can present it to each new doctor. I am very lucky in that my doctors have been (on a whole fabulous except for one experience with a cardiologist…). He was the one that actually asked me if it was possible that I had untreated ADHD. I had never thought so before and just thought it was anxiety so I went and got examined and yup. I do have it (and so do both of my parents).
@@nataliestanchevski4628 I've heard it said (sorry can't recall where) that ADHD is the most common outcome of something going higgledy in the brain. Add the current climate our brains are trying to function in (social media, cost of living crisis/inflation, loneliness epidemic etc) and I think it's only becoming more common. Plus the majority of nonmedical treatments are also proven to be good for typical brains. I think we're missing the forest for the trees in a way with ADHD, but it's definitely real and medical treatment is definitely necessary for many. It's the dunning Kruger effect though, they know a lot so they think they know everything. Which really is the dark side of awareness summed up.
When someone says "but you look fine" you have 2 options:
1) ask if they are accusing you of faking or asking what concealer you use
2) tell them of course you look fine because you're disabled, not ugly
Love this, savage
I'm stealing this 😂
this is the most perfect response ever...
I am not disabled, but I lost my weight through (warning: TMI) my butt after years of having to plan every hour of my day in function of how I expected my bowel to react after I got what I guess is some form of IBS, which is still following me after a decade. Yet, I get compliments for my figure by people. Like, I am happy with how I look, but I didn't sweat it out at the gym and if I eat enough chickpeas I can get even thinner, all at the small cost of my health. I wish we all got the message by now, but at least I'm happy we're talking about it. Being pretty ain't worth risking your life. Let's change how we think "beauty", because it sure isn't objective, rather thinking that way makes it easier for those that fear being perceived as an outsider.
@@mimmikibilly yep, I lost weight from being in too much pain to workout and often too nauseous to even drink water. But people get really mad when they ask for my "secret" and I tell them the truth. Apparently I'm just supposed to say thank you for the compliment. Ah yes "your sick body looks great" is such a compliment. 🙄
I will never forget the feeling when my dr told me I didn't look like I have executive dysfunction. It was an excruciating effort to make myself "presentable" to leave the house for the appointment after 3 months of not bathing because of the worsening condition of my mental health. 15 years of documented mental health treatment and still having my complaints dismissed by my own doctor. It's soul crushing to not be believed.
It's also funny when doctors scold me for being late to an appointment or not paying for weeks because it makes me super anxious. Like, yeah that sucks for them and I shouldn't do that but I think as a psychiatrist, who diagnosed me with depression, anxiety and ADHD, this behavior should not really come as a surprise.
You need to be well enough to get yourself to a doctor in order to get medical treatment, so inherently, the doctors are not gonna see you at your worst. It's absurd when this is then used against you.
@@killitwithfire5377exactly.
@@killitwithfire5377 yep. I had a doctor "inform" me I wasn't in any pain because I was dressed. No, not changed out of pajamas, wearing clothes at all. Like yeah, really can't imagine why I put on clothes before going outside in the middle of winter, I mean besides that it's illegal to be nude in public where I live.
A different doc tried to kick me out of the ER "because you're obviously fine because you are answering my questions". Yeah, I don't think replying "huhhhh?" to literally everything is answering. I was told what happened later by my partner who was with me, I only remember bits and pieces. Including passing out in the middle of his "I can see there's no[thing wrong with you]" BS. Oh and my partner is the one who checked on me, despite being out for less than 10 seconds, the doc was gone by the time I came to.
Yep I had the same and had to say how long it had been since I had been able to shower. I think she was shocked and a little bit realised her mistake but still the fact I had washed and managed to get to this appointment was still against me somehow (she didn’t ask how many medical appointments I had to cancel or missed because of physical and mental health issues or adhd and social anxiety from autism.
I'm a therapist, and since getting paneled with insurance, I've gotten SO many referrals from clients who first saw a doctor and was told that their symptoms were "just anxiety". Usually upon ruling out a panic attack, I end up having to refer them right back to the doctor to run tests. Therapists are taught that you can't assume something is psychological unless you've run tests to rule out medical cause, and so I often end up playing medical advocate and have to remind doctors of this until they run tests.
They did this to me quite a few times and every therapist ever agreed that my anxiety and depression is directly affected by being in pain 24/7. Shocker. I'm in therapy with an amazing psychologist who understands chronic pain and on antidepressants, so that seems to put some doctors at ease a bit
Maybe that’s why I finally ended up with a solid diagnosis that made sense for nearly all of my worst symptoms that had previously been blamed on my anxiety, so now I know I have migraines and orthostatic hypotention as well as anxiety and that diagnosis happened after I got a referral to the psychologist in the doctors office for my anxiety, either way thank you for being there for your patients and getting them the medical testing they needed.
Please help me...
I once saw a new provider at my pain specialists office. I was just fed up with the pain and was convinced I was having a hardware issue with the spinal stimulator I had had surgically implanted the year before. He was so condescending, and told me “ I’d really recommend you see a therapist to help with managing your pain”, telling me I my thinking was “too negative and catastrophic”. I went from tearful to furious. I AM a therapist. Side note…. I had a revision surgery a couple months later to replace the defective part that was hurting.
It took my psychiatrists advocacy to get appropriate pain meds. She basically had to vouch that I'm not a drug seeker. Fun times. Didn't even ask for anything strong just something better than fucking Ibuprofen. 🙃
The internist said I was drug seeking. The gynecologist found a 2.5 cm cyst on my left ovary. Gotta love referred pain! 😂
HIGHLY recommend using something like the Mankoski Pain Scale, which has specific descriptions for what 0-10 mean. It includes details like "Cannot be ignored for more than 30 minutes" and "interferes with sleep" as well as painkiller effectiveness. On this scale, a 10 is unconscious, so you will need to show the scale to your doctor if they're not familiar.
My mom went to the doctor and told him that her pain level was a 9 and she was sent home with some extra strength tylenol. The next day she was in so much pain she fainted and had to be taken to the hospital in an ambulance. She was unconscious for almost 9 hours, and continued to be in pain during her 5-day stay. Three months later (yes, three months) a doctor decided to ask for an x-ray of her back (she had been talking about back pain the entire time) which showed that she had broken bones at the bottom of her spine. She was in the hospital for 5 days complaining of back pain and no one took an x-ray of her back?
thanks
That is a much better scale. How much [insert symptom] interferes with your life matters a lot more than how your pain compares to other people. Though 10 being unconscious would make it a bit weird for me. Because when my migraine gets really bad, like it's absolute worst, I am non-functional and can't process or really respond much in any way to what's going on around me. Like I'll close my eyes or turn away from a light being shined in my eyes, but they might as well be speaking ancient Babylonian when asking me my name. Meanwhile a different (thankfully since surgically fixed) problem would make me pass out at about 80% of the pain level of my worst migraine pain.
I don’t really think any analog scale works for pain management… at least in my experience…
It’s more a set of conditionals…
- Can I physically leave my bed without assistance?
- Can I sleep without taking opiates?
- Can I function without taking opiates?
- Once medicated (usually prescribed weed, but sometimes opiates) can I function or do I need to relax?
- is the medication working?
I don’t really know any time I can ignore my pain btw…
my migraines are an 8 on that scale! how fun
As someone with Lupus/PSA I have heard it all from people when disclosing. People just don't care to hear it, unless they can judge what you did to cause it, badger you on why you won't try their magic diet to "cure" it, or tell you why what you are going through isn't an "excuse", or some other toxic-positivity nonsense.
Most people do not understand Lupus. What it does to your body, your nervous system, your mental health. Take care of yourself first.
Diet does.make autoimmune issues towards better..no cure but betternis always..better. cheers
@@dana102083someone just told you they're tired of hearing about it, so you told them about it again. If you haven't learned by now, then today you get to learn that giving unsolicited or expressly refused advice is rude. How do you know they're not already following or have tried the diet you speak of? And to top it off, you just say, "cheers", as if what you just said was cute. I hope no one ever treats you as obnoxiously as you just treated OP. Stop doing that sort of thing, seriously. Also, I don't read replies. Get better soon.
@@dana102083 I was diagnosed at 27 at the very height of my being healthy prime of my life really. My mostly vegan diet, by all measures was excellent. My BMI was Excellent. My lifestyle and exercise ruetine were on point, and I was in the best cardiovascular shape of my life. As a mere mortal (who didn't have access to infinite money, a personal trainer, chef, and had to work), there really wasn't more I could reasonably be doing, but I got sick anyways. It just doesn't "always get better if you would just do "x". Going Keto, or paleo, or carnivore won't "fix" me. Nor will cutting out nightshades, gluten, or soy. I can be doing everything right, and I could still even get worse. These days, more than a decade later, I do the best I can with what I have. I will trust my medical team over someone with the "secret" knowledge that doctors "don't want you to know".
I don’t have lupus, but I do have chronic illnesses (yes, plural) and I can’t count the number of times people have offered unsolicited advice and tried to tell me what I need to do to cure myself. All the diets, exercises, miracle lotions, potions and cures, endlessly suggested by people who know nothing and were never asked for their input.
Why do people think we haven’t already tried everything?
Why do people think we want their input?
People don’t understand or care to understand that we’ve found the things that work for us, there is no cure, we are doing the absolute best we can in any moment and we didn’t disclose our illness just so they could give us their two cents?
"So you know... the royals in brittain are doing great!" - I shouldn't laugh but that delivery was perfect
Yup I remember when Lady Gaga came out and for a moment it seemed raising awareness would improve things, but no. Now lots of people have heard of fibromyalgia, but they have completely backwards ideas about what it is and doctors are definitely not immune. I get accused of faking constantly still but much worse are the ones who "believe" me and then try to take me off all my meds and put me on an antidepressant because "fibromyalgia is just trauma and you need to deal with your trauma" like I haven't been in therapy for 6yrs longer than I've had this condition. Currently fighting accusations I'm faking in divorce proceedings...it never ends 😔
WTF I thought that they worked out what causes the pain in fibro and no one suggested that it was caused by trauma. I do know that there is an antidepressant that seems to help some people but that is a nice bonus, not because they think that fibro is caused by depression.
@@amandamandamands yeah they "figure it out" every couple years with a crappy study. One found nearly all women with fibro had been SA or harassed (no control group) and another found just over a third had extra capillaries in their hands (less than 20 people were in the study and they skewed older.) It tends to be based on the myths that have formed. We do know how it works though, the fascia becomes stiff and sticky and restricts movement causing pain. It's also probable that we have more pain sensing nerves in the fascia. Unfortunately it's only recently the medical community has accepted that the fascia is a functional organ and not just "scaffolding and stuffing" and the research is being done well now so will take some time. Plus there's the resistance of the medical community to admitting mistakes to overcome which will take even longer. The discovery started with physical therapists and the development of a technique called myofacial release which you can now find a trained therapist in nearly everywhere. I still have plenty of pain and difficulty, use a power wheelchair now and was a dancer 20yrs ago, but it's taken me from flares confining me to bed for months to being able to drive almost every day. I've been going for 6years now.
@@aprildawnsunshine4326 I have noticed that there is always resistance when finding out that a diagnosis that had been a kind of well you are complaining so here is a label for you is found to have validity and an actual medical reason behind it.
Saw the same thing with chronic fatigue and for mental health BPD and other personality disorders.
It takes so long for people to get on board that there is a real thing going on and these people aren't just faking it for attention.
I have never told any doctor or any person other than those very close to me in my life about my diagnosis of fibromyalgia, only because of the negative association. I have Ehlers-Danlos syndrome, which explains a lot of things, thankfully. But the stigma is so bad that even I avoid talking about it because I don't want to be perceived as faking.
@@aprildawnsunshine4326”nearly all women in the study had been SAed or harassed in the study” is especially heinous because nearly all women PERIOD have been SAed or harassed
It took me 5 years to get any medical professional to believe I was having life altering symptoms. 5 years. When a Dr finally decided to shut me up by running some tests, they were surprised that I was indeed in great pain, and disabled. Now I finally have good medical team who both listens to and believes me, and pursues proper diagnostics and treatment. Welcome to the US
Been dismissed by doctors for years for my chronic illness. It cost me jobs and educational opportunities. For years I was told that it was normal because I was a woman and that I had to just live it. You have no idea how awful it feels to be told your medical condition is normal for a woman. I've been self managing for decades and it only sometimes works. My overall solution is to avoid people when the condition worsens.
Women need to be taken more seriously for their health conditions. Just because my pain is low today doesn't mean that it is that low all of the time. We are not faking. We just want to be believed.
Thank you for being awesome and reminding the world that chronic illnesses look differently for different people. It doesn't mean that you are not to be believed.
Went to ER with double vision, doctor said my difficulty was subjective therefore not really an identifiable issue. After leaving, and contacting other doctors. found out I had the first symptoms of Myasthenia Gravis, and it could be seen given the incorrect alignment of my eyes. Long story short, it is hard to be unbelieved.
❤ good thing you went to another Dr. and how is double vision subjective????
@@jennifers5560 Yes-- everyone's vision is "subjective". What a useless, uncaring attitude. If your vision changes in a way that is worrying, it's vital to try to get it looked seriously.
@@argusfleibeit1165 exactly!!
It's so subjective that I haven't realised that other people don't see double untill I was a teen (two eyes and two images - it made sense in my head). I tried to get help for it for years (while it was impacting my education because I couldn't read without horrible migraines) and had the chief of pediatric ophthalmology ward tell me it must be psychological when they couldn't explain my condition during a diagnostic stay. When that doctor who's meant to help children jumped straight to medical gaslighting, I should have known it won't get better from there. I still don't know why my vision is broken, but I also don't have the energy to beg for answers because I have to fight for help for ME/CFS and POTS (and who knows what else)
I’ve lost most of my hearing in one ear because I was misdiagnosed at urgent care and not believed about my serious hearing loss. The infection did permanent hearing loss. I’m lucky enough that some of my hearing is able to be corrected with hearing aids but sadly it’ll never be perfect. My job requires me to hear as a key component. It makes me so angry.
Per my doctor: Endometriosis can cause adhesions so strong that they end up stabilizing and your body adapts around them and they stop hurting- hence sometimes people can think they’re “cured.” And if you feel better I suppose it may as well be true… but there are so many variations of it and it isn’t well understood, feeling better doesn’t mean you aren’t being impacted. Believe yourself and follow up if symptoms bother you. The average diagnosis time is still about 9 years.
I’m convinced this happened to me. I used to get such debilitating pain that I couldn’t walk. My pain improved but I had other weird symptoms that eventually got soft-diagnosed as endo, but I kept gaslighting myself into delaying surgery because it “wasn’t that bed.”
When I finally got the surgery, my endo was pretty serious (probably late stage 3) and I definitely needed it, even though I had convinced myself I was “fine.”
I would like to thank Jessica for the editing acrobatics it took to create this video with the many different Jessica voices that conveyed different persona that play a part in judging people with chronic illness. This was a fabulous video and thank you for speaking to this important subject!
I especially loved the sleeves on the green blouse.
I do exactly what you said about the pain thing. I have chronic pain in general and in my own head i've learned to downplay in such a way that it allows me to function most of the time even when very bad. Due to nasty side effects for some medical treatment, i had a 5 week long period. So bad I ended up in A&E and having to take 2 different blood clotting meds. When i was in the room, I was explaining it was very painful, and they did the 1-10 scale and so I say it's a 9. They seem shocked, as I was sitting there like normal, completely able to talk to them. My flatmate was with me, and he stopped them when they asked are you sure, pointed out I have chronic pain and in order to you know, live, I'm very very good at masking. So he explained all of the signs of pain he saw in me when at home and comfortable, and they finally did examinations and gave me treatment. I feel like people who dono't have chronic pain, just don't understand how much we work to show we aren't in pain. It becomes a habit that is incredibly tough to break, so having that support from someone close to you is incredibly helpful.
This is why support is so important! I was in the ER (usa a&e) with severe leg pain and unable to walk. I happened to be laughing at a joke a nurse made when the doctor walked in and said I must be faking because I'm smiling. There were a few nurses in there, they couldn't get the IV going, and they stood up for me thankfully but if not I'm pretty sure he was going to kick me out and I couldn't move my legs without blinding pain
Yep. I've been told I'd be screaming if I "was actually in that much pain" when my migraine forces me to the ER due to severe nausea and dehydration. Yeah, can't imagine why I'm not screaming with a noise sensitive migraine. Tried to kick me out, then got mad when I couldn't produce a urine sample. I got an IV after that (I think to punish me with a needle to get blood for testing to "prove" I was fine), except it took 4 nurses to get an IV in. They had to get the smallest needle and it still was a challenge.
@@aprildawnsunshine4326 yep, like I've gotten very good at hiding symptoms of pain, kinda tends to happen when you live with something for years. I had a doc ignore my horrific cramps that were causing me to pass out any time I moved anything that wasn't my head, arms and toes so my doc (my partner called the emergency line) told me to go to the ER with instructions to have them call her. My partner had to call an ambulance to get me there because she had no way of getting me to the car, but because I was lucid when I wasn't moving he didn't think I was in pain. Well that and "Cramps are painless".
When my husband and I got married his medical coverage at the time said I needed to request and submit my medical records from my doctors. It was a hassle but I did what was needed. So I got to look at my records. I stopped seeing one doctor as soon as I read all the notes he had taken. He literally said in my records I was faking symptoms. There were test results that came back, tests that were ordered for me, that I was never told there might be issues. I had something for four years before another doctor caught it on blood work and said x might be a problem so they ran another test and went, yes you have x. Lets work on this. But my old doctor just brushed off my concerns and complaints. I was also told by him, many, many times that it was just due to it being "that time of month" and nothing to be done as it would pass in a few days. When I was seeing him I really thought that maybe a lot of things were just in my head. Because obviously the person who was trained would know better.
I’m so sorry you were treated like that. I’m glad you found a doctor who actually listens.
My first OB-GYN during my pregnancy wrote nasty comments in my chart, too. It was very upsetting. She also never told me that I had fibroids. And when I got diagnosed with gestational diabetes during the process of switching OB-GYNs, she didn't bother to even tell me and didn't give me a prescription for a blood glucose test kit. At least she referred me to a specialist, but they were clearly not expecting to be breaking the news of my diagnosis and scrambling to get me the necessary equipment.
As someone with bipolar disorder, ADHD and PTSD, and clearly only one trauma since everyone knows you can only have just one (kidding ofc), and as an advocate for people with mental health issues for 14+ years, I have obviously never been accused of lying about it for attention, and have no idea what you are talking about 😑😅❤️🫠
Jokes aside, thank you for bringing attention to this in a kind and responsible (and funny) way, it is so needed, especially from someone who understands and knows what it's like. It brings more reason and kindness into this crazy world of ours 😌❤️💕✨🍀
I want to say, I really appreciate what you said near the end there. About the effect of poverty on chronic conditions. I'm homeless and live in my car. And I'm diabetic. When I'm able to use a kitchen to cook healthy foods (such as today, I'm thankfully at friends' house) I do better. Luckily, it's not bad enough to require insulin. But when I was diagnosed about a year ago, I was living with some friends and the initial improvement actually impressed my doctor. She even acknowledged that I would probably be able to get off the one medication I'm on (Metformin.) But I had to go back to car-dwelling (as planned, my friends really didn't have space for me) and it was hard. Ready-made foods are less healthy AND more expensive than whole-food ingredients.
❤
Fellow chronically ill vehicle dweller. It might be worth it to invest in a small grill and a cooler if you can. Having the resources is good in case you do have the energy to cook something
I’m FtM, was diagnosed at 16 with endometriosis, and started developing symptoms of PCOS (but not yet diagnosed) at 20. My weight fluctuates a lot because some days I literally cannot get out of bed, the pain is so bad.
I’ve been told HRT treatment will help (which is awesome because it will also help my medical transition). But I have yet to hear back on if my insurance has approved this… Same insurance told me they will only pay for vocal therapy if I was not diagnosed with autism.
I don’t tend to comment on videos, because replies scare me, but seriously, thank you Jessica. This really helped. I can tell from all the other comments on this video that it’s helping to validate a lot of other people with chronic illnesses as well.
❤
You are valid ❤
17:32 In the case of Selena Gomez, I think part of her "weight-gain" was her body maturing. When she first started in Wizards of Waverly Place, she would've been only 15 and it ended when she was 19. I got taller and bigger only when I was 19 or so. I think with celebrities there's an expectation for them to maintain their body type/shape well into their 30s and when she was in WoW she was fairly skinny (like a typical teen). Her now, (to be clear I think she still looks fantastic) she looks like an adult.
Ages ago, before I knew about my chronic conditions, I was sick and running a fever. It was a high fever - over 101 F. I remember some jerk telling me I couldn't be sick, I had such a healthy glow. I yelled at him that what he called a 'healthy glow' was the flush from my fever. People need to learn to mind their own business. Thank you for this, Jessica!
I suspect I have endo, and I am fed up of having my pain dismissed (8.5 years and counting). I can’t even get them to investigate properly. It’s hard to even talk about this to doctors in the first place as a trans man. 🙃
Not being believed or not taken seriously really sucks.
I hope you‘ll find your way and people to get what you need!
Greeting,
Sam (they/them)
That sucks man.😢 I've had endo too.
It can be extremely difficult to get laparoscopies to fix the damage it courses; even if you can get onto a hormone treatment that will make it go inactive.
Such as testosterone or the pill.
Ermmm I don't know if this is something you'd considered, cus I don't know about you or your pain; but I found that my hysterectomy reduced my pain more than anything.
Had 2 previous surgeries with 10 year gaps, (cus even cis it's hard to get); with it always growing back, and crippling me while trying to get them to do it again.
The standard recommendation is for 6-7 repeated surgeries every 5 years to tackle regrowth, if hormones alone can't control it.
Honestly I wish I'd asked for them to remove my uterus 20 years ago.
The laparoscopies would take my pain down from 10 to 7, with it lasting a year or so.
But this has gone from 10 to 4, with a 5% chance of regrowing.
Might be worth thinking about if hormone therapy isn't helping much, as it can sometimes be easier for guys to get.
A couple of my guy friends were around a year or so faster on the lists than me this way.
Really sorry if I'm over stepping, it's just this disease has made me a full time wheelchair user, and too sick to work.
Feel free to ignore me if this isn't for you. 🙂 Hope you have a nice day.
@@vickymc9695 I’ve been fighting for a hysterectomy for a few years, and I’m currently (finally) waiting for an appointment with a consultant gynaecologist to hopefully get approved, and then onto the waiting list for actual surgery, or at the very least any tests they need doing beforehand. Getting even this close has been almost impossible within the nhs, and has involved several layers of approval, waiting, referring on, official complaints etc. If I wasn’t on testosterone I wouldn’t be able to cope. Having periods was traumatic both emotionally and physically. I’m now almost 8 years on T, I suspect I’ll be at minimum 9 years on it when/if I finally get my hysto, but I’m hopeful it will solve most of my issues, or at the very least they see irrefutable evidence that I’m not imagining things and that they should have listened and investigated. The thought of having to endure this agony almost constantly forever is deeply frightening. My latest referral for the pain was discharged without even meeting me, with their “impression” being that it’s functional pain and that I should just learn to deal with it. Zero further investigation. Again. Told to keep taking pain meds (by which they mean paracetamol, despite me telling them none have ever helped, even very strong ones).
I’m sorry you’ve had so much trouble with endo and getting treatment for it. The standard of care from diagnosis to treatment is appalling and so obviously steeped in medical misogyny.
@@samalsrei5089 thank you :) hopefully just a few more hoops 😅
the online communities can be difficult to navigate but it is worth looking for lists of endo-affirming doctors in your state if you haven’t already- I wish I had them to hand but there are compiled lists of docs who have been helpful (and the deep difficulty of having the condition as a man must be so ironically frustrating- all good vibes and good luck to you)
Jessica! I wanted to let you know that my professor linked one of your videos in my college Human Sexuality class. It was so surprising and lovely to see someone I have watched for years involved in my class module. She linked the "My wife is not an angel" video. It made my heart warm to know everyone in my class was watching the video, and hopefully coming away with a better understanding of interabled relationships. ❤
And I live in Florida. Your videos are such a valuable resource they are being used in college classes! I just thought it was really cool.
I have type 1 diabetes and I just wanted to slightly clarify what you said about the relationship between diabetes and diet. It's true that diet choices can impact your chances of getting type 2 diabetes, but genetics play a huge role! And type 1 is an autoimmune disease, so what you eat actually plays zero role in whether you get it! It can be upsetting when people just assume bad diet = diabetes because it contributes to this narrative that people with diabetes deserve what they got (not saying you were saying that, but it's a popular narrative). That's why I actually appreciate celebrities like Nick Jonas being super glamorously fit (even if it's a little unrealistic for most people), because it gives people a different image of diabetes than the usual overweight person with an amputated leg
And there can be weird exceptions to even the seemingly obvious type 1 and 2 groups. I worked with a lady, mid 50's that had diabetes. She'd said it was type 2 and I didn't think much of it. Then a few months later she said something about having had diabetes since her 20's and I responded, "Whoa whoa whoa. How have you had type 2 diabetes since your _20's?"_
Turns out that she'd been in an extreme accident that left her with several fused vertebrae, plates in several major bones, and missing 75% of her pancreas. So she technically had type 2 diabetes for reasons having nothing to do with her weight, metabolism or diet.
I'd guarantee that she'd experienced negative remarks or discrimination due to having the "it's-your-own-fault" diabetes when it was clearly nothing of her own doing that lead to it. One of many millions of examples of why to not make assumptions about people's health.
@@CorwinFound As a diabetic of almost 20 years myself - I was mid-20's when I got diagnosed - it was only recently that I found out that I am actually type 1! I was categorised as type 2 for all that time - type 2b, to be exact, so the main problem was not insulin production but absorption. I have a genetic predisposition (on both parents' sides) and am admittedly obese, so type 2 did make sense. Never heard of LADA (late onset autoimmune diabetes in the adult) in all those years...
So there are a lot of things "the public" doesn't know and even those directly affected might not know even for a rather well-studied disease like diabetes, not to speak of conditions like endometriosis which have only begun to be taken seriously recently.
I don't know why it's so hard to believe people about what they experience and not to judge 😮💨.
@@CorwinFoundthis! I was diagnosed with type 2 about 3 years ago. I have SLE -Lupus with multiple organ involvement, which includes my pancreas. Hence. I also have an odd form of insulin resistance. If ONE more person tries to talk to me about what to and what not to eat-I may literally go off on them. I am not obese. I have a Primary, who is an Internal Medicine Dr, Rheumatologist, Neurologist, Gastroenterologist, AND a Nutritionist. I promise I do not need any other opinions/advice. It’s exhausting…
the amount of time I had DOCTORS and NURSES tell me "but you don't look diabetic". My dude. I was one year old when I got diabetes, and that is written on my chart. What exactly am I supposed to look like...
The vast majority of type 2 diabetics are indeed overweight
14:55 - I hope House is still a relevant reference because that’s the gif I sent everyone after my latest panel of tests confirmed that my exhaustion/pain/etc is not caused by Lupus.
That particular reference will always be current among the right people.
My mum dreaded going to the doctors for years due to her issues being dismissed. She was told she had abnormal periods when she'd been bleeding for two months straight at one point. After dismissing her lord knows how many times, they finally sent her to a specialist who (what felt like) instantly told her she has cancer and needed treatment as soon as possible. Unfortunately they caught it too late. But it makes me wonder every day would I still have my mum if the GP didn't just tell her all of her signs were just "menopause" or her "period". If you feel like there is something wrong with your body advocate for it. Don't let people question you on how your body is feeling.
My tip is always try and take a guy into the room with you, just to nod when you're talking. Doctor are more likely to believe your pain and symptoms if you've accompanied by a bloke 🤦. Other tip is to dress up. Neat hair, smart clothes, makeup if you use it.
The halo effect makes them more likely to listen to what you say, and follow through with the blinking care pathway they're met to.
It sucks to have to attend every hospital appointment looking like your going to a job interview but it does work.
Yes! My mother gets all dressed up, takes her luxury handbag and wears a Rolex watch to the doctors for this exact purpose. Unfortunately they dont allow a second person in the consulatation room since Covid so my dad couldnt go in and nod along anymore.
Dressing up isn’t always the best option though - I’ve been told ”You can’t be in as much pain as you’re claiming if you’re able to dress up/wear make up/dye your hair” etc… And also that I look ”too happy”, ”too relaxed” etc. to be in pain.
I ALWAYS wear expensive jewelry to the doctors, Emergency Room, etc. This also helps when you have to strip down & get in a hospital gown. They can still see the expensive (but subtle) jewelry.
It makes a HUGE difference in whether they believe my pain or not.
And whether they give me pain medication.
Because poor people only have pain that is provable by tests & evidence because they're addicts who are only after pain meds. 🙄😒
Where do you people live ?
@@Karincl7 I'm in the US.
Loved the trio of Jessica’s but the last 45 seconds were just outstanding!
Another important aspect of this issue is that some people "translate" their attitudes about celebrities to common people. Ignorant comments about Selena's body may not be super hurtful in a vacuum (her manager, probably, reads them) but they build a culture in which it's acceptable to say such things. Tomorrow, a cashier Wendy will hear it and she's less equipped to deal with public negativity. Today, you tell Bella Hadid the Lyme disease isn't real. Tomorrow, you tell an old lady at the bus stop it isn't.
Plus it's more than just the celebrity reading those ignorant comments. Just because they are technically directed at say Selena doesn't mean there aren't many other people in a similar situation reading it and be hurt by it, even if you'd never say it to a 'normal person' in real life.
@@sarahgowen3692 Good point.
@@sarahgowen3692 yep. I've had people try and get me to join in on mocking [insert celebrity I've usually never heard of] "for pretending that [condition I personally have] is real". Yeah, that gets real awkward real fast. Because, as long as I am safe from physical retaliation, I have no shame.
💯
@@waffles3629 I can't say I relate - obviously, me, an able-bodied person jumping on the conversation would be weird - but, I've had many people try to get me to join mocking a visibly queer celebrity not knowing I'm queer.
As a person with EDS having pain taken seriously is a luxury
If it/they aren’t hurting me, I have no right to complain/compare/criticize.
I have had horrible migraines since I was 11. A manager I work with has been telling people he thinks they aren’t real.
It sucks having chronic pain, people can’t see it, I can’t prove it unless I want to bring in 30 years of medical paperwork.
I hate having to tell people about it. But also having to defend myself is utterly absurd and deeply hurtful.
On top of being in pain all the time I have to deal with people who accuse me of making it up.
Not taking about people you don’t know and don’t know what they are going through 👏🏼👏🏼👏🏼
The editing in this video is amazing and the effort put into it needs to be appreciated
Right?? Shoutout to Clara!
As someone with surgically diagnosed endo, the “pain is a part of being a woman” was so normalised to me, and still affect me even now.
Despite getting surgery, I still have seemingly random abdominal pain (much milder than before but still uncomfortable) and it’s so hard to understand what’s “normal pain” or not.
I’m glad I moved to a country that seems to take women’s pain more seriously (one of the few things that is actually “progressive” in South Korea) but it’s still a very real issue.
Also, please, if your period pain is causing you to vomit or faint, please please see a doctor and look into a diagnosis and don’t act like it’s “normal.” It is not and not only does it affect you, but “normalising” debilitating pain can actually be detrimental to awareness of chronic pain. I delayed diagnosis for endo because I was convinced my pain was “normal” (it was not) because “at least I haven’t vomited from the pain…”
Thank you for making this video. It‘s never okay to comment on people‘s bodies without their consent especially when shaming (commenting negative).
It doesn‘t matter how famous you are or what gender you have.
My mother had Parkinson’s disease. She was diagnosed when she was 36 years old. I was 4. I remember as a kid never staying at family functions for long, once her tremors started we would leave. She hid her disease for much of my younger years. But later she began speaking out, when I was 13 she even went on an American day time talk show along with her Doctor who was a leading expert of Parkinson’s.
When I was in high school I was taking an Anatomy/physiology class and she came in and talked to the classes each hour about Parkinson’s. For years after students who were taking that course would see me and ask how my mom was doing.
When Micheal J Fox came out with his diagnosis, it really changed things. My mom was always open to talking about her disease but it took a long time for her to get there. But even then she hid just how difficult her day to day (sometimes hour to hour) life was.
I was her full time care giver later and being her voice was at times a up hill battle. Being a woman as well making my voice heard was a challenge. Fortunately for much of my mom’s time when dealing with this disease my father was always there as her advocate and making sure her voice was heard.
No one can know what is going on with someone behind closed doors. As the saying goes you can’t understand until you’ve walked a mile in someone else’s shoes. Give others the grace you would ask for yourself.
Thank you Jessica for talking about this and also sharing some of your own experiences and struggles. ❤
As someone with several autoimmune diseases, sometimes I worry what people must think about my visible symptoms. People can be so rude.
Thank you so much for posting this. I have Chronic Lyme and Bartonella. Lyme and tick disease are not just spread my ticks but also spiders, fleas, and mosquitoes. Birds are the biggest spreaders through migration- ticks attach to them and drop off when bloated. Testing is inaccurate and outdated.
Chronic Lyme is a controversial diagnosis.
I hope you feel better in the future
Thank you for including endometriosis and the current trend of patients being told to 'just eat right'! ❤
Cruelty infuriates me! Thank you for another video on this topic, Jessica! I was diagnosed with lupus 45 years ago and it meant a lot to me to see Selena Gomez talk about it! And she’s positively brilliant in Only Murders in the Building!
Any time I try to talk to my dad about the symptoms I have, and that I want to be tested for things (like Autism, pots, eds) he accuses me of self diagnosing. And in the case of autism, literally said it’s offensive to my brother who is diagnosed. All I wanted to do was talk to him about whats going on with my life, the things i have many symptoms of… I cant even talk to him about anything.
I’ve been struggling with chronic pain and dizziness and other things for a while, and I’ve tried so hard to get my doctor to do something. I on,y recently learned the symptoms of pots, and I have a lot of them, like heart racing when i lie down, then being dizzy when I get back up, which is the main one that has caused me to want to be tested for it.
As someone with POTS you are valid in questioning whether you have had it. I made the doctor give me every diagnostic test wven after my diagnosis because I wanted my ex and other doctors to stop questioning if I really have it. I knew I had it and asked my gp for a referal to a specialist for it and I was right. You are not insulting anyone by doing this. We all need to be our own advocates.
@@cynicallemonade1792 thank you. What bothers me most is the fact that its my dad. Like, any other person- it wouldnt bother me as much
Autism is strongly genetic, so the fact that your brother is autistic should make him *more* inclined to believe you, not less.
@@ettinakitten5047 you would think that, especially since I’m older than my brother.
@@Lady_dromeda Yeah I know that it hurts when family disappoints us. 😞 Hugs. Hopefully you can find a support system other thn him that will loft you up.
Loving the dynamic between the three different Jessicas. Getting a Contrapoints vibe almost. Would love to see this fleshed out more in future vids
I LOVE JESSICA! She makes me feel so warm and welcomed with every video 🥰
I’d just like to thank you for how amazing the closed captions are. I can tell you did actually put effort into creating them or used money to hire somebody to do it for you. So many creators, even with millions of subscribers (Mr. Beast and many beauty TH-camr) don’t do that
Legit even if Jameela Jamil did have Munchausen's, that is a real illness in and of itself, and people with it often do end up actually ill from unnecessary medical procedures and/or harming themselves in order to induce symptoms. Munchausen's is more tragic than often portrayed - I just read a case report of an older man who developed it following the sudden death of his son. We should always default to compassion.
Watched this while dealing with a pain flare and I have to say, I really needed this. ❤️
just put in my two weeks at my job after (multiple other things but this definitely was part of it) a coworker INSISTED all my medical issues were fake because I mentioned my doctor "thinks I possibly have fibromyalgia but the diagnosis process is too expensive to look into right now." one singular undiagnosed thing I mentioned in a one off conversation was enough to now invalidate all my actual written on paper diagnoses. Yay.
I always appreciate you acknowledging the existence of nuance because it’s often dismissed when a solution works for one person - there are too many factors to consider when trying to apply what works for one person onto another, especially when their circumstances don’t allow said solution to be as attainable.
"youve got this. youre doing great." got me. thank you jessica
THANK YOU for putting the message out there! I have had so many issues with body awareness. Four years ago an emergency back surgery severely damaged my spinal cord which resulted in many chronic issues - including needing a wheelchair and a lot of pain medication. And these medications caused me to gain a lot of weight. The judgement I have received since then - also from medical professionals - is truly, truly humbling. And I was a nurse before the operation myself. For years doctors more or less ignored my back pain. It’s „normal“ for nurses to have back pain. Well, even as it is - there could still be severe medical issues like for me. When it was finally discovered is was too late and I had to undergo a very difficult emergency surgery. The outcome could have been so much better if it would have been diagnosed earlier. I just wish for people to take pain seriously - and especially for medical professionals.
I'm so sorry to hear about your experiences- a similar thing happened to me with spine issues that was dismissed by doctors as back pain. I ended up becoming partially paralysed and a full time wheelchair user. There were treatments that could have potentially prevented it but they didn't investigate properly. I've also gained a bunch of weight too ❤
It's also physically more difficult to get plenty of exercise if you can't walk. I think about that every time I see a wheelchair user getting fat-shamed.
@@ettinakitten5047 definitely, I've been trying to get more exersise as a powerchair user - the closest wheelchair acsessible gym to me is almost an hour away on public transport, and I live in London 😭
Can we take a minute to adore how beautiful all the outfit and hair styles are that she put in here?! Must have taken forever, especially the editing! I am stunned! She is stunning ❤️
You talking about Ehlers Danlos syndrome helped a good friend of mine get diagnosed. Neither of us was familiar with it beforehand, and having a name and a description suddenly made the list of weird and seemingly random symptoms into a "wait a minute..." moment.
I had that moment when I read up on lupus. I'm currently doing more research, but I should probably see a doctor...I keep feeling worse no matter what I do
YEARS ago, as a kid, i remember a lot of people at my school gossiping about MJ and how he got a lot of plastic surgery and all the usual gossipy nonsense around that. It was only years later that I came to know that a big reason for all the makeup etc, (and iirc his song "black of white") was his struggle with vitiligo. the crazy part was, imo, one of my classmates HAD vitiligo and he (like MJ) had otherwise dark skin (vitiligo is more obvious on people with darker skin). We all knew what it was, or at least experience with it.
The first time I can remember dealing with how dismissive people are of pain if they can't see what's wrong, I was probably 12 or 13 and I'd been experiencing what I still believe is a tendon issue. The doctor took X-rays, told me my bones looked good, and sent me home. Good to know that bones are the only part of the human body that can be responsible for pain.
Ugh. I finally got xrays around 19 after having knee pain from probably age 8, and was diagnosed with osteoarthritis in my knee and the best thing I ever did was see a physioterapist. With pain issues that don't seem to be near an organ, I'll see my physiotherapist before I'll bother with a doctor, doc might give me a diagnosis but never ever have I gotten good pain or symptom management about joints from a doctor. I'm just glad my body responds well to physio, xrays in my 30s showed the knee structure hadn't gotten worse.
I tore something in my arm, like literal audible sound, but xrays showed nothing broken so physio told me I was fine.
2yrs later I literally have no strength in that arm with an overhand grip - it's fricked 😂
(And yes, I have to laugh about it because otherwise I'd be crying)
the outro🥺🥺tysm i really needed to hear this
If we need proof that we humans do not actually have control over our own health, weight and general appearance, this is it. These celebrities have money, time resources and motivation (their appearance is literally tied to their ability to be hired and do their job) and even they cannot prevent cancer, weight gain, aging, chronic illness, etc. So can we get off each other's backs about all these things that are not under our control EVEN when we have access to all the best treatments and preventative care?
That last part 😢 💜. Thanks I needed that reminder today. Sending positive vibes and spoons to those that need them
Love hearing you spread awareness about social determinants of health! 👏🏻🙌🏻
Hey fibromyalgia mentioned and believed, thank you 💚 excellent video, I always feel safe when you talk about chronic illnesses, it makes us feel seen.
This reminds me of a time where I was really struggling with my depression and there was just so much content about "high functioning depression". It just made me more sad that all the attention seemed to go to these people who seemingly still managed to do all these things while suffering from depression and I could barely do the day minimum (basic hygiene, clothes and a meal, preferably something very filling because I had energy only for one meal, if possible cook for two so I had leftovers the next day).
17:50 Bothers me too!! I am hanging on your lips instead of going to sleep rn. I am on a clock, and need to be somewhere on time tomorrow...but I just love to hear someone say, what I want to say all the time.
It's so so great that you stand up for all of these celebs.
I really appreciate that you talked about body shaming. It's something I've dealt with frequently after an anti-depressant medication caused me to gain more than 5 stone in 7 months. Even doctors treat me differently and blame my physical health issues on weight gain, despite the fact that my health was bad long before the weight gain (and I now finally have a diagnosis of EDS!)
Same here, I didn’t have weight issues until I was on antidepressants, and now every time I see new doctors, I brace for when they tell me I’m kinda overweight and give me a lecture about diet and exercise.
We live our lives with our "chronic illness", and we can have good days and we can have "This is too hard, I'm not able to do simple things to take care of me." days. We are unique and our days are often spent throwing out the schedule. That's okay. Chronic illness can't read the stupid schedule! We are okay anyway.
God bless you, Jessica. I love your videos!
Bonnie
love the new way to film where you answer yourself, very dynamic
I'm from PA (Lyme capital of the world) and have had Lyme ~3 times. My brother got it once and it almost killed him. Another person I know got it once and it destroyed her central nervous system, completely and permanently effecting her life. Another was paralyzed. It absolutely is a mysterious and unique infection. Check for ticks always after being in grass or woods
Absolutely. I’ve been treating my late stage lyme for the last 8 years I had been a wheelchair user 5 years, now on crutches, had seizures, debilitating fatique, bells palsy at times, tics, paraestesias, and a myriad of cognitive issues. Also you might not remember a tick, but if you tend to have a multiple unexplained health issues, maybe look into it!
@@eliskakomarkova such a good point, also I'm incredibly sorry you've had to go through all that!! I'm a microbiologist and of course have a personal interest in Lyme.... Did you know that we developed an effective vaccine for Lyme but don't produce it anymore bc it didn't sell well enough? (In case youre in the mood to feel angry 😂😭)
Lovely Jessica, what a wonderful video. The only thing better than one Jessica is three Jessicas!
I have a goddaughter who recently got a lupus diagnosis, and hearing about her fight to cope with a malady that seems to change every day and has treatments but no cure is disheartening, to say the least. At least the people in her life seem to have believed her that something was wrong. How terrible to be suffering and to have people think that you’re just malingering.
And yes, _House_ references will always be relevant.
Love your videos, and I love how you covered this real issue with the conversations around celebrity health and privacy. Also that green dress or top with the sleeves is STUNNING! I would love a spring closet update.
My favorite was when my doctor totally ignored my obvious discomfort over a medication she wanted to prescribe and then proceeded to insist upon the medication until i finally said yes so that she would let me leave. I never picked up or used said medication and have since found a new doctor who doesn’t try to brow beat me into taking anti-psychotics for mild depression.
I have suffered from problems around my period since my late teens. It got worse over the years. When I was too sick to go to work for 2-3 days every month I finally looked for professional help. The first thing I tried helped great for 6 months and then gradually worked less and less. In January this year my OBGYN told me I was listening into myself too much and that only ignoring my symptoms would help after the first pill made things much worse. Basically she told me it was rather psychological. Fortunately found a different professional who was willing to try something else which is working so far.
I've had migraines since I was a kid that got suddenly worse earlier this year withouf any cause we've been able to determine. I've had to leave work on disability while I work to find a treatment and whenever I'm having a good day and decide to go out, I'm afraid someone at work will see me and think I've been faking. I've also gained weight due to having to spend so much time laying in a dark room while dealing with a migraine and I'm very self-conscious about it. Thank you for talking about this.
Love your videos Jessica! I have lupus, endometriosis and Raynauds which is quite challenging on top of my adhd and autism diagnoses - quite a few people I know ask me about Selena Gomez and the weight thing just makes me so mad when they mention it. I usually get the comments “but your weight doesn’t change like hers” and I have to remind them that one line of treatment for lupus is one line of treatment - whatever Selena is on is probably different to me. The fact she’s in the states and I’m in the uk will also make a difference to what meds are available too. Selena has been good for getting information out there but I remind people that these celebrities do in fact have money and easier access to healthcare unlike us regular folk. Thank you so much for all the information in this video - I’ve really enjoyed watching this one and probs one of my favourite videos you’ve done! Love all the outfits and the 3 Jessica’s they made me chuckle! ❤
13:40 lyme disease awareness is SUPER important! ticks are a HUGE cause of lyme disease, especially here in the US, but not ALL ticks can cause it. it's mainly deer ticks, which are smaller than dog ticks and can be harder to spot, but not impossible. it's easy to keep them away though! just wear long pants and socks if you're in tall grass, and check your skin and hair for bugs after you leave the grass--or you can just take a long thorough shower immediately after and scrub the hell out of your scalp when you shampoo! source: my first job as a teenager was in my home county's parks and rec dept, specifically in conservation, so i learned a lot about lyme and ticks and had to flick them off myself a few times.
this is especially important considering that the ongoing SARS-CoV-2 pandemic is making a lot more people chronically ill (even as they downplay it as us being lazy or not wanting to work, in hopes that we'll get back to the office and keep making money for the shareholders).
*just a PSA that if you are chronically ill--or if you don't want to become chronically ill--one of the most powerful ways to protect yourself is to keep or resume masking (N95 or better), cleaning the air with HEPA/Corsi-Rosenthal boxes, and staying up to date with your boosters.*
YES!!! Thank you for saying this. It’s so wild to see even other disabled people, including some who consider themselves activists, ignoring these facts!
Yes! And if you're in the UK or elsewhere in Europe, FFP2 and FFP3 are the types of masks to look for.
When I went into the ER with suspected appendicitis, the doctors seemed shocked with it actually was. Like I was faking the pain / got it mixed up with period pain!
I really enjoy the 3 Jessicas format ❤
I've been dealing with scoliosis since I was very small and had a surgery to correct it once it got too severe during the pandemic. Ever since then, I've had aggressive back pain that leaves me bedridden for hours on end, tire easily, have difficulty breathing and struggle to balance myself (I trip and fall with ease now). My mom has been taking me to the same doctor that did my surgery for years and he's always brushed off my complaints with simply "you need to push yourself more" and the like. Finally got my mom to take me to a new specialist and we found out that apparently, my previous doctor half-assed my surgery and the curve in my spine is STILL growing; it just that it's a tilt rather than the two curves I used to have. Presumably it's putting pressure on my lungs as well, so that's just lovely. Took FOUR years to find out, which is honestly ridiculous. Luckily the new specialist has referred us to another group of doctors so we can get a second opinion (he doesn't want to rush into another surgery without knowing for certain that I need it) so things are looking up. But honestly, it's so ridiculous that a guy who's been treating me for YEARS would brush me off like that. Like, what the heck- we literally pay him to make sure that my spine is doing alright????
16:57 The number of times I've been told: "you can't possibly be autistic, you look phenomenal" (as if autism isn't the very reason Makeup became one of my special interests/fixations for such a LONG time, like I'm gonna look great a lot of the time) or "you don't have an autoimmune disease, you're so put together and not complaining about physical pain" (lol I complained the entire way there, and if I complain they call me a buzzkill. 🙃)
Like... Goddamn it people, EMPATHY.
Being believed is a whole side topic on another youtube channel I follow. The channel is about leaving Mormonism but one member has endo and gives advice about bringing a spouse, parent, or male friend/relative to advocate for you to force the doctor to take you seriously.
It sucks so hard that I have to bring my husband to all my doctors appointments just so I'm not dismissed.
Both Jessicas look gorgeous! My goodness what a wardrobe!!!
Telling people their bodies are not meeting your standard is ridiculous. It's not punching up, it's just mean.
That last part made me cry. Love you Jessica ❤
I was told to rest and take Tylenol and later got an antibiotic. But when the doctor eventually ordered a CT scan, I was held in radiology and quickly sent into emergency surgery 🤷♀️
As someone who works in the mental health sector (with chronic health conditions) professionals not taking people’s pain seriously happens in this industry too- especially for women and as you say present them selves well for appointments- hello social contract! Believe people when they share their pain- whatever context, however you know them. And yes, privilege! Ah! What a wonderful world to believe everyone has the access to and spoons available to be able to have what they need to support their health! Spoon theory and issues of intersectionality are very important! Love your work Jessica!! 😍 PS- love the pep talk at the end ❤❤❤
I wish everyone would stop body shaming EVERYONE! I did watch the video, im just agreeing
Not me holding back tears throughout the video but sobbing at the end T_T thank you for all the love, wonderful video as always (and dang looks like it must’ve taken a looottt of effort)
16:41 "Go ahead, ask them"
Facts. I had a doctor dismiss the fact that I was in any pain because I was dressed. No, not that I'd changed out of pajamas, that I was wearing clothes. Yeah, I can't imagine why I put clothes on before going outside in the middle of winter, you know besides for the fact it's illegal where I live to be nude in public.
I just saw a documentary on Selena last week and I think she’s pretty great. Body shaming anyone is simply WRONG. Lord knows we do enough damage to ourselves.
Glad you brought up the situation with Princess Kate! I felt bad for her having to go through all that public scrutiny when going through cancer is tough enough! Sometimes I would wonder what kind she might have, but it's also not my business! It's like we forget sometimes that the royal family and other celebrities are still people.
I also love what you said at the end about how we only show the "highlight reels" of our lives. I personally like my privacy when it comes to medical things but I know others have their reasons they might want to share, and neither is wrong/bad.
I think part of the issue with Americans being unkind to ill celebrities is that they have access to the best doctors and always get their medications. I think there is a mindset that its not possible to really feel "that bad" when you are so used to seeing you areused to seeing your friends and family unable to get any care at all
see that's the thing. I have Fibro and Chronic Fatigue and literally no one believes me because they only see me on my "good days" that is, days I am able to get out of bed. No one sees me on my bad days because im in too much pain to move. This makes college and work quite hard. And yes, just because Lady Gaga can do it doesnt mean that I am overplaying my pain
I have endometriosis and the amount of bizarre things people have said to me about it is boggling. The main one is to tell me that getting pregnant will cure it because their friend's cousin's wife's whoever had it and it was completely gone when they had a kid. The one that really got me though was a nurse at my medical practice who basically told me that a lot of my problems, especially with pain would be solved by losing weight. I'm on two different contraceptives to try to alleviate the symptoms and I've been roughly the same weight with very little fluctuation for almost 20 years. Somehow, I don't think that's going to be the miracle cure-all you think it is.
THANK YOU so much for taking the high road in the cesspool of internet female body commentary. It is awful and we should all stand up for body neutrality; we all are lucky to have bodies, they all look different, we are allowed to exist in them, take photos in them, like them for ourselves, and just NOT CONSTANTLY BE MICROMANAGED in them. I don't care if my body is 'right' or 'wrong' to anyone else, I just want to be treated with dignity.
2 people in my family as well as myself have lupus. For all 3 of us it also causes major swelling. We’ve all had it on our faces, abdomens, and legs. We’ve had people who were quick to talk about how much weight we gained and then lost it. We know we look larger we don’t need judgemental commentary on it. I’ve always felt terrible for Selena for that.
I had to get checked for endometriosis a while back and I was so nervous, because my doctors office can be a bit sceptical sometimes and luckily I had a new doctor. Initially he said I was too young to have endometriosis BUT later that same day he called to correct himself, saying I should come back because he did some additional research and age wasn’t as relevant as he thought it was. I’m very happy he did, because when I went to check they couldn’t find anything, but the rule of thumb in the Netherlands is “if it sounds like endometriosis we treat it as endometriosis” so they might’ve caught it before anything could grow on my ovaries. I think my doctors were very aware of medical sexism and that awareness meant I was taken seriously every step of the way. It’s so important that people know about it. Medical sexism is one of the scariest things there is and though I’m glad my experience was positive, I shouldn’t have to feel relief because I was believed.
Thank you for talking about this intersection of ableism again!! Address it each time. People should not have to explain themselves.
I really enjoyed this video Jessica - it was fun to watch and a clever way of presenting different viewpoints. I don’t really follow celebrities but I have been appalled by the media treatment and speculation about Princess Kate. I don’t envy doctors trying to diagnose patients and work out if patients are lying or telling half truths, because people do not always tell the truth about their symptoms and do try to cheat and manipulate medical systems. On the other hand, I have also been a victim of doctors making assumptions about me because of my appearance and of not being believed when I said my breathing difficulties were not due to anxiety because ‘ you have a long history of medical appointments due to anxiety’. In the latter case, the GP only believed I was not having a panic attack after she gave me medication to treat an asthma attack and it helped! I KNOW what anxiety feels like and how it affects me because I have been struggling with mental illness for most of my life. If I say it isn’t anxiety, how about believing me and looking for another cause of my breathing difficulties?
I don't have a long term chronic illness, but I was temporarily disabled three years ago, and having people not listen to or believe your pain is just awful
I had sciatica from piriformis syndrome, and it was the most pain I've ever experienced, even worse than my kidney infection or hysterectomy. I wasn't even able to sit, so I couldn't drive or do almost anything but stay in bed. nobody, not friends, family, or even doctors, NOBODY was listening to my pain. I was particularly upset with my ex for this, because he knew I have a high pain tolerance, a high pain threshold, and I almost never complain about physical pain, so I feel like he of all people should have understood that something was wrong. I was inpatient for a week for mental health at multiple points, and I had to beg the doctors for an xray because I was positive something had to be broken. even once they (almost) properly diagnosed me with sciatica, the physical therapists weren't listening to my pain either. until one woman, thank goodness, listened to me and did a physical exam, and she was like oh, it's piriformis syndrome, you've been doing the wrong stretches 🤦
it took like over half a year to go through all of that, and even longer for the physical therapy to start working, and I still have to stretch sometimes. I already believed people when they said they were in pain or something was wrong, but now I have an even greater understanding of what that can mean to someone, and a greater appreciation for when someone shares their story
thank you for the video 💖
I have suffered from anxiety and depression since I was a teenager. I have been over medicated and under medicated for decades. I was in my early 50’s when I was finally properly diagnosed and medicated. It changed my life and made me finally realize that the stress of my job ( Cardiac ICU RN) was contributing to my disease. I cut down my hours and until the pandemic hit was doing very well. I picked up a lot of overtime as we were all in desperate need. I have finally retired but I still have stress dreams. Good luck to everyone out there dealing with one kind of illness or another!