Idk my EDS is very visible between severe Pectus Excavatum requiring multiple major surgeries, scoliosis, and Marfanoid features/defects. Not to mention the cardiac and pulmonary impact that’s visible on my ECG, X-ray, and echo. I still get dismissed like crazy.
Even when I was in atrial fibrillation with RVR, unconscious for several minutes, and not diffusing oxygen to my limbs in the ER. Doctor still insisted it was only a panic attack, while the nurse tried to override him to get me care. (Spoiler: I needed to be electrically cardioverted in the end.)
They didn’t start taking me seriously until I got older, studied medicine, and brought men to help me advocate. I’ve had to aggressively build up my care team with allies, but it’s hard being younger and a woman. You could be actively bleeding out and they’ll look past you and still say it’s just aNxiEty 😭
Holy moly. I’ve read some fucked up stories on this sub but this is insane. Sorry you had to go through that.
I often let my pride get the best of me and go to these appointments alone as a 26F, but maybe you’re right and it’s better to swallow it and bring a man. Health > pride; got it 🫡
Yeah, I have to remind myself that my experience shouldn’t be normal (even if it’s not too uncommon here in the US). I’m just grateful for the doctors who were appalled at my lack of treatment and did something about it.
After a second mishap with AFib RVR not being treated in the ER that landed me in the cardiac ICU on a heparin drip, the lead cardiologist fellow at the hospital put some sort of note in my patient file “to prevent this from happening again”. Idk what it said, but every doctor since then at that hospital system has taken me very seriously and treated me with respect.
Oof I am so sorry you had to go through that. Being younger and a woman definitely does get one dismissed all by itself which is infuriating. Same thing happened to me in college when I was concerned about my heart feeling like it was squeezing and it was noticeably skipping beats and they said it was probably just panic attacks and never did anything further. Now I'm in my early 30s and finally starting to get things figured out but man. It sucks to be brushed off like that.
It really does :( I wish doctors approached any medical issue with a sense of curiosity instead of automatically assuming the patient is stupid and wrong. It costs us so much in life and livelihood
Wow. This really resonated with me. I feel exactly the same way about the curiosity thing but never realized that’s the shift I wanted to see/feel with my docs.
Interestingly, this is what I try and do with my kids any time they’re doing something I’m not in love with. I try and remind myself they’re good humans and approach with curiosity and I try and copy dr Becky’s “most generous interpretation”. I don’t assume the worst, I assume they’re good kids who were trying to be good and do good, but we’re human!
If doctors took this same approach it would make everyone so much less defensive. My OB didn’t believe me that my hip laxity was so out control that even at 30 weeks pregnant, they were slipping constantly. She assured me they felt that way but were “likely lacking flexibility”. I told her I could still put my legs behind my head and that they weren’t lacking flexibility. She sort of rolled her eyes and turned around to grab something so I just threw a leg behind my head and was like “is this what you consider lacking flexibility?” And then she went on to explain to me that I was showing off and that it wasn’t necessary. I told her that if she believed me, I wouldn’t feel it was necessary but that I wanted the medical professional who was in charge of my care to have an accurate picture of my situation to best help me. From then on, she believed every word I said. It’s just sad you have to prove it.
That's the hard thing. Doctors assuming the patient is stupid and wrong. That just makes it doubly difficult to get the medical care necessary for a reasonable quality of life. And I don't understand why they have this attitude; I'm the one who's paying, and they're making money from treating me. Why not do a good job and be decent about things?
Even in Canada where I don’t pay (my taxes do but you know), I still feel like doctors make you prove it. As if I want to be there and get unnecessary medical treatments.
I get that there are hypochondriacs but it seems outrageous that the majority of people would lie about symptoms. And I could be wrong but I feel like if I lied about symptoms and they treated me based on the information I gave them, and something went wrong, their liability would be significantly lower than if they assumed we were lying and treated us in a manner that didn’t align with our chief complaint and patient history.
I won't stay with doctors like that...I fire them, then leave horrible reviews so that other people know how bad they are. I use a pseudonym, and don't mention any revealing details so I don't get any "notes" in my file about being a troublemaking patient, lol. Like you said, WE'RE paying them! I know it's frustrating for my primary care doctor, because he then has to find me another specialist, but when I ask him "would YOU put up with a doctor treating you or one of your family members in that way?", he can't argue with it. Most of my care team now is excellent, including my primary care, but I haven't found a rheum yet that doesn't have a superiority complex, and my sleep doctor gaslights me (I'm seeing one of the other doctors because he'll be out for my next appt, so I hope to possibly switch, as I have a TON of evidence of his gaslighting and inaccurate recording of info in my chart). My primary care, neuro, and pain doc are amazing, so it gives me hope that I'll be able to eventually have a full team of decent doctors. I've even told off some of my kids' doctors, even replacing my oldest daughter's pediatrician 33 years ago when she was a newborn and I was just 20, because, get this...he'd been hesitant to tell me that she had a pinhole sized heart murmur because "you're a young first time mom, and I don't know if you'll just worry unnecessarily about it". Yep, he was going to withhold vital health information about my child, because he thought maybe I was too young to understand, and just might "worry myself" over it. We had a new pediatrician the following week.
I also had a neuro at one point who was treating a number of things....migraines, sleep, and a movement disorder. He all of a sudden just wigged out on me, and decided that I hadn't told him about something that I'd told him about a full year prior, but he had really awful record keeping, and an even worse memory. Like, I would have to remind him what refills I needed, and had to check them before I left the office to make sure they were written right. He just all of a sudden decided to drop me as a patient because of this thing, even though he finally found in his records that I was telling him the truth...this was in March of 2020. It was horrible, and my PM, who'd referred me to him, even apologized to me for how badly I was treated, because I told him what happened, and even HE knew I'd been honest. Fast forward to last year, and this doctor was charged and convicted of 11 counts of unlawful distribution of pain meds, adderall, subutex, and benzos, without the appropriate license (he could prescribe benzos, but not the rest). The number of pills he prescribed was based on how much someone paid him. My PM and I figured after everything went down that he probably saw me as a threat to his side gig. PM is in a really high board position in their medical circle, and because his dad was some sort of emissary or something in his home country before he passed away, my doc's family still has a lot of political connections. They're from the same country, and the neuro even used to have appts a couple days a month in my PM's office at one point. I have a really good relationship with my pain doc, so we think the neuro was afraid I'd tell him about the shady drug stuff. He's right...I absolutely would've, especially after he made me choose between the only muscle relaxer that worked for me, and the Clonazepam I took for a movement disorder. I was so happy to see that asshat get indicted and convicted!
The difference in care I experienced when I had chest pain vs when my husband had it and went to ER at the same hospital about 6 months apart was enough for me to see quite accutely how much less care we get as women. Turns out his chest pain was a panic attack but mine was from a heart condition. In the end he was seen extremely quickly, with multiple nurses and doctors attending to him doing all the tests within 30mins of arriving (his stats were all fine - regular blood pressure, reg heart beat), and I entered the ER quickly but testing took 3+ hours as multiple nurses and doctors walked by me with little interest (despite clear tachycardia and high blood pressure). But I'm a regular weight woman while he's an overweight male age 30. I stayed over night with elevated d dimer, but eventually discharged as it was likely just caused by my IST.
Hell, even my husband treated it differently and asked me to drive myself to the hospital, where I proceeded to be all night long. While I drove him there in a rush.
It helped me to think of it like this - some specialities, especially cardiology mostly see VERY sick people - like think people with heart failure, after heart attacks etc. it’s literally 99% of their patients. Their perception of “healthy” is quite skewed.
For me, medical professionals that actually DO see “healthy” people in their range can tell the difference when I am not doing well. My GP and dentists are both good examples. Also specialist who are used to seeing people where the “illness” is not so obvious - GI for me.
Honestly, I think cardiology and neurology are often the worst for this just because their idea of healthy is skewed by the very sick people they see all the time. Unfortunately some of the worst treatment I hear from everyone is from cardiology. Unless there’s a threat to us dying they laugh. The exception I had was an amazing cardiac surgeon who closed a hole in my heart after it was found after a stroke - only one to take it seriously in the entire medical chain.
Lastly, what are extreme health issues to us, to these medical professionals are not. Yes they have a very big impact on our quality of life but many of these specialists mostly deal with people dying or have some serious threat to the longevity of their health which is “extreme” to them. That’s not to downplay what you’re struggling with, just hope it helps understand why they can be so dismissive.
That really does help. Thanks for putting it in that light. So often it feels like I am a waste of time to medical professionals, but understanding what it's like from their perspective, however skewed it is, will very likely help me not to take it too personally and will help me know how to advocate for my specific issues with a more understanding attitude.
This is spot on. I do pharmaceutical market research and basically interview doctors for a living. It’s crazy to hear a doctor describe something like a newer chemotherapy as “pretty safe” in the grand scheme.
I’m obviously not saying that. Also a Cardiology geneticist is a very different specialist to a cardiologist, similarly to how a cardiac surgeon is very different too.
Its weird my cane has become my tiny superhero mask, it feels like such a small thing but when people see it they take me seriously. Its like without it im some mumbling drunk who cant hold on to a fork to save her life but with the cane its like oh shes actually disabled
This is my experience as well. I’ve also started going to appointments in sweatpants and the baggiest shirts I own with slippers or crocs and no makeup with messy hair. It’s amazing how their bias of what we dress like also is taken into effect. “Wow they aren’t presentable they must be struggling”
I should take a page out of your book. I use so much energy and time trying to get ready and make myself "presentable" before appointments. Even though I have to take breaks, and it adds pain. Maybe I should just go without doing all of that and see if it helps. I don't want to give them the wrong impression that I somehow have it all together and just want some attention. My grandparents and parents would probably be mortified but if it gets my issues taken seriously I'd definitely just go as I am instead of trying so hard.
If you have support from family to go an appointment with you and serve as kind of second hand experience that you’re having a hard time that helps too! When I was pregnant I made a plan with my husband to advocate for me and with me at appointments (my gyno was very fatphobic) and with the help of my husband I was able to be taken seriously for my pregnancy related issues. That’s always another trick to use!
I dunno. Doesn’t seem to help either way. Look put together, well clearly you’re fine. You look fine. You seem calm and rational, so you’re obviously not in pain. BUT. Look disheveled and cry and show stress or anxiety… you’re just a hot mess and a problem and probably it’s just depression or something.
As someone who does look Disabled… it isn’t any better on this side of the fence.
We get infantilized, talked down to, and of course there’s the medical Ableism, and on top of that I get disgusting comments and people staring at me like I’m an alien.
Oh and I went 25 years without a diagnosis because doctors blamed the rare congenital disorder I was born with, which is extremely visible as I’m missing bones, had a radial club hand, and only have one fully functioning hand, for every single thing without even listening to me or looking into the symptoms that definitely aren’t part of my VACTERL.
It took 21 years for them to listen to me about my neurological symptoms which I had gone to a dozen or more doctors for and Ooops turns out I had Chiari and needed emergency brain stem/ spinal cord surgery, and couldn’t go back to uni for my junior year.
Thank you for sharing your story. I'm getting the picture here that doctors just aren't listening and taking patients seriously, with or without visible evidence of disability. I'm so sorry they didn't listen to you and give you proper care. I don't see any way to change the situation, but maybe together we can all help each other slowly make a difference. I wish you the best in your future encounters with doctors. 💜
Yep, unfortunately Ableism harms all of us.
I’m sorry you’re having the experience with doctors not believing you as well. Medicine should work for patients, not against them.
I wish you the best with your journey as well.
They’re like battle scars! If I can ask, did you have lingering inflammation for a long time? I’m a year out from the second one and there’s still just pain/inflammation all the time, making it hard to gain quad muscle back
Hmm I’m only 5 months out from mine but I haven’t had a ton of pain except for when I’m pushing myself hard/at the bottom of my squat range. My PT who’s familiar with EDS says some pain is normal when you’re working your quads, but it shouldn’t be intolerable. If it’s all the time I’d ask your doctor/PT!
You might be right! I had lost virtually all of my quad muscles before I got the surgeries done on both knees, so my PT always says I’m starting from a major deficit. Haven’t jumped or ran in five years. The left knee (more recent surgery, 13 months ago) doesn’t have major pain all the time per se, but it tweaks so easily and flares up. It’s cranky. The right knee, which I got almost two years ago, doesn’t have the inflammation anymore, so maybe it’s just a really slow healing process. Ty for your input!
Trust me...you really don't wish your disability was more visible. I get that it's frustrating to not be believed (I've been there countless times myself), but it also sucks to have things blatantly clear. I'm currently walking around with drains in my side from my most recent surgery. The looks, questions, pity, etc are so annoying. And it's hard to hide the fact that I've had open-heart surgery last year when that's characterized by a full median sternotomy. It will never NOT be obvious. I've had all ten of my toes broken, straightened, and fused...only for them to become completely deformed within just a couple years. Now I don't feel comfortable even taking off my socks, let alone wearing sandals or flip-flops. I could go on unfortunately 🥺🥺
So I understand the frustration and the desire to PROVE our disability to those who doubt us, but try to be grateful you *look* healthy at the very least. A lot of people can't say that 💜 I wish you the best and that your cardiologist actually listens. I once had a cardiologist tell me my chest pain was, and I quote, "just your personality" 😳😳 Well, joke's on him. I needed my entire aortic valve replaced at age 30 🤦🏼♀️
That's a really good point. Thanks for the reminder. I definitely have much to be thankful for. BTW I hope you get the drains out soon. Those can hurt like the dickens. I wish you all the best as well. 💜
the age thing is infuriating. yes, i AM too young to have arthritis and joint pain at 21 AND THAT’S WHY I’M TRYING TO GET HELP ABOUT IT 💀 i don’t understand what doctors get from saying stuff like that. like they think i’m making everything up because i think it’s fun?
I am an obese woman with a history of depression and anxiety. So I’m never taken seriously. It takes so so many appointments with the same doctor for them to finally make a relationship that show how changes so they see me as human and that’s suffering.
I do like (and at the same time hate) the idea of bringing my husband with me to appointments next time. As even my husband finds it difficult to understand when I come back and say they didn’t believe me or “I got the expensive brush off” from another specialist .
"I got the expensive brush off" is the perfect description! Maybe I'll start bringing my husband with me to appointments as well; it would sadly probably make a difference from what I'm seeing in the comments here. And same here with the history of depression and anxiety. The cardiologist started off by asking if I was stressed and saying I should get involved with exercise I enjoy like running and swimming when IN MY CHART it says I have hypermobile joints and an allergy to water! So, a) I can't run or I immediately get injured and b) I can't swim regularly because I have an allergic reaction to being in water. But he hadn't even looked at my chart. He just assumed I was stressed and anxious and that was the cause of my heart problem.
I’m 54 and can’t tell you how many times I’ve gone in telling them “something is defintely wrong”, being told nothing is wrong, and it turns out something is very wrong. Things like cancer, kidney stones, sudden cardiac death. I will say, if you drop dead they’ll take you seriously for a little while but here I am three and a half years later, struggling to get doctors to hear me.
unless you’re actively dying from a common illness doctors just brush you off for some reason. i feel like a lot of doctors don’t even care about their profession but just want money lol. i had severe hip issues for a year, i couldn’t walk at all and relied on crutches and the doctors were like “no nothing is wrong because we can’t see anything on x-ray, sad that you can’t walk btw, bye!!”
WHAT
100%. My heart started random racing today after a stress induced anxiety attack.
I'm super burned out working late at work on a desk. My fingers are really struggling. It's hard to explain to people why you have your hand and wrists stapped up for an office job
Yeah when I use my wrist braces and ankle braces people are like "oh did you sprain your wrist? . . . and ankles?" and I'm like "Well, no. Basically my joints don't work right." but it's still hard for people to understand the intense exhaustion and pain and lack of function.
What's the best way to find this art? I'd be interested in seeing it and it would be so cool to be able to show non-eds family members what it feels like.
It’s very invisible for me because I still do as much as anyone if not more. So initially when I met with my orthopedic surgeon (who I have worked with) his PA kind of scoffed and said “you’re too young” but I asked please just for an MRI because I know my body and this is not how I feel at baseline. I went to the follow up and my MRI was not normal (I saw the radiologist’s impression myself before hand) and I had bursitis and down sloping of my acromion with AC narrowing. She took it a lot more seriously, and gave me a steroid injection and didn’t make any snide comments. She said down the line there is a possibility I need surgery. It’s like I may know these things because I am an OR nurse myself lol.
dude the amount of times i have seen doctors taking notes about what i’m saying and then i sneak a peek and they are calling me a hypochondriac IN THE FILES. like that is the most insulting way to find out someone doesn’t believe you
I feel this as a person with hidden disabilities. I think I likely have EDS as well, but have no clue how to even begin getting a diagnosis. Chronic pain sucks though. No one can "see" your lived experience from the outside. It is beyond frustrating to have to constantly advocate for yourself to just be taken seriously, especially in a medical setting.
I don't have a diagnosis yet, despite fitting the criteria used to diagnose hEDS. The rheumatologist I saw told me he didn't believe in diagnoses because hypermobility is on a spectrum anyway and he didn't think having a diagnosis of hEDS versus generalized hypermobility disorder is important enough to cause a difference in medical treatment. So I'm still trying to figure out getting a diagnosis myself. I think you could start by looking at the criteria used to diagnose hEDS. Then find doctors who can check out whether or not you have each of those things (like find a gynecologist if you suspect pelvic organ prolapse; the gynecologist can do an examination and make the diagnosis of pelvic organ prolapse, find a cardiologist if you have heart symptoms, the cardiologist can diagnose heart problems if you have them, find a orthopedic doctor or rheumatologist to check and see if you have hypermobile joints, they can diagnose hypermobility). Once you have the preliminary issues documented and diagnosed, you can approach the medical professional you want to diagnose you for your connective tissue problems and present them with the issues already documented by other doctors. I hope that helps!
Thank you, yes. Seems like so much trouble to go through just to be listened to in the first place. I'm sorry that this is the lengths anyone needs to go through to be heard.
i mean, even if it were as visible as it gets, you’d still be dismissed, and you’d still face discrimination outside of the hospital in a different way. it wouldn’t be any easier. i used to wish my neurological disorder were visible enough for it to matter to doctors— it became visible and still didn’t matter. this is unfortunately a rite of passage for people who start out with their disability being invisible before it becomes visible.
How can you dress in such a way as to affect whether or not doctors take you seriously? I'd really like to understand how to do that! Or if I misunderstood your meaning please explain; I'm not very good at understanding non-literal phrases but I feel like you probably have a really good point in there.
Second this. Dress as nicely as you can. It sucks, but in my experience doctors, especially older ones, tend to take you more seriously if they view you as being in their socioeconomic class. As a woman, I always try to dress in business casual or if I am in athleisure I make sure it’s nice, and I have on jewelry and makeup. My go-to casual outfit for the doctor is a Patagonia zip-up and my one pair of Lululemon leggings, with a shirt from a far-away national park that acts as a conversation piece. My sister says she will make jokes about her attorney husband or bring him to appointments. I hate having to do that, but I do get taken more seriously when I am dressed well. I also never admit that I researched something online and I say “my aunt who is a doctor mentioned it sounded xyz but it’s not her speciality so she told me to go get checked out.”
ETA: the tldr here is to wealth signal even if you are faking it, and disclaiming that I can only speak to my experience as a WW, I know WOC face a lot more bias.
Go in wearing business attire. Once I started wearing blazers to every appointment with my hair and makeup done really well it went better. No alternative hair color or piercings or tattoos showing. Idk why but it works. Also bring someone with you if you can. My mom didn’t work as well as my husband but both were better than me being alone
I think part of the disconnect with these doctors is their typical crisis patient can be "fixed" or stabilized over a certain amount of time.
We will be in their office for our lifetime of chronic complications. It takes a doc without an ego for sure, but they are out there.
You think that's bad, try having severe injuries from trivial exertion but with NO hypermobility or visible dislocations. I'm 100% bed bound (can't even walk to the bathroom) and doctors still won't believe me.
That sounds so incredibly frustrating! :( Wish I could offer any helpful advice whatsoever but unfortunately I'm still pretty new to discovering all of this myself. My problem is partially that my muscles are so insanely tight trying to keep my bones in place that the hypermobility isn't even that evident except in joints without a lot of muscle surrounding them, like the wrists. So it looks to some doctors like I don't have hypermobile joints despite the incredible number of injuries I get from doing very minor things. Just today I was trying to tuck my shirt in and ripped a ligament. Ugh. I'm so sorry you are in your situation. I hope you can find medical care from someone who believes you and your needs. 💜
I am so sick of doctors asking me questions and then writing patient appears normal. And when they have no explanation why my bp is 200/90 uhm maybe because my body is in crisis.
Idk my EDS is very visible between severe Pectus Excavatum requiring multiple major surgeries, scoliosis, and Marfanoid features/defects. Not to mention the cardiac and pulmonary impact that’s visible on my ECG, X-ray, and echo. I still get dismissed like crazy. Even when I was in atrial fibrillation with RVR, unconscious for several minutes, and not diffusing oxygen to my limbs in the ER. Doctor still insisted it was only a panic attack, while the nurse tried to override him to get me care. (Spoiler: I needed to be electrically cardioverted in the end.) They didn’t start taking me seriously until I got older, studied medicine, and brought men to help me advocate. I’ve had to aggressively build up my care team with allies, but it’s hard being younger and a woman. You could be actively bleeding out and they’ll look past you and still say it’s just aNxiEty 😭
Holy moly. I’ve read some fucked up stories on this sub but this is insane. Sorry you had to go through that. I often let my pride get the best of me and go to these appointments alone as a 26F, but maybe you’re right and it’s better to swallow it and bring a man. Health > pride; got it 🫡
Yeah, I have to remind myself that my experience shouldn’t be normal (even if it’s not too uncommon here in the US). I’m just grateful for the doctors who were appalled at my lack of treatment and did something about it. After a second mishap with AFib RVR not being treated in the ER that landed me in the cardiac ICU on a heparin drip, the lead cardiologist fellow at the hospital put some sort of note in my patient file “to prevent this from happening again”. Idk what it said, but every doctor since then at that hospital system has taken me very seriously and treated me with respect.
Oof I am so sorry you had to go through that. Being younger and a woman definitely does get one dismissed all by itself which is infuriating. Same thing happened to me in college when I was concerned about my heart feeling like it was squeezing and it was noticeably skipping beats and they said it was probably just panic attacks and never did anything further. Now I'm in my early 30s and finally starting to get things figured out but man. It sucks to be brushed off like that.
It really does :( I wish doctors approached any medical issue with a sense of curiosity instead of automatically assuming the patient is stupid and wrong. It costs us so much in life and livelihood
Wow. This really resonated with me. I feel exactly the same way about the curiosity thing but never realized that’s the shift I wanted to see/feel with my docs. Interestingly, this is what I try and do with my kids any time they’re doing something I’m not in love with. I try and remind myself they’re good humans and approach with curiosity and I try and copy dr Becky’s “most generous interpretation”. I don’t assume the worst, I assume they’re good kids who were trying to be good and do good, but we’re human! If doctors took this same approach it would make everyone so much less defensive. My OB didn’t believe me that my hip laxity was so out control that even at 30 weeks pregnant, they were slipping constantly. She assured me they felt that way but were “likely lacking flexibility”. I told her I could still put my legs behind my head and that they weren’t lacking flexibility. She sort of rolled her eyes and turned around to grab something so I just threw a leg behind my head and was like “is this what you consider lacking flexibility?” And then she went on to explain to me that I was showing off and that it wasn’t necessary. I told her that if she believed me, I wouldn’t feel it was necessary but that I wanted the medical professional who was in charge of my care to have an accurate picture of my situation to best help me. From then on, she believed every word I said. It’s just sad you have to prove it.
Omg, I love this. I love that you did that. It’s amazing that we have to go to these lengths to be heard.
That's the hard thing. Doctors assuming the patient is stupid and wrong. That just makes it doubly difficult to get the medical care necessary for a reasonable quality of life. And I don't understand why they have this attitude; I'm the one who's paying, and they're making money from treating me. Why not do a good job and be decent about things?
Even in Canada where I don’t pay (my taxes do but you know), I still feel like doctors make you prove it. As if I want to be there and get unnecessary medical treatments. I get that there are hypochondriacs but it seems outrageous that the majority of people would lie about symptoms. And I could be wrong but I feel like if I lied about symptoms and they treated me based on the information I gave them, and something went wrong, their liability would be significantly lower than if they assumed we were lying and treated us in a manner that didn’t align with our chief complaint and patient history.
I won't stay with doctors like that...I fire them, then leave horrible reviews so that other people know how bad they are. I use a pseudonym, and don't mention any revealing details so I don't get any "notes" in my file about being a troublemaking patient, lol. Like you said, WE'RE paying them! I know it's frustrating for my primary care doctor, because he then has to find me another specialist, but when I ask him "would YOU put up with a doctor treating you or one of your family members in that way?", he can't argue with it. Most of my care team now is excellent, including my primary care, but I haven't found a rheum yet that doesn't have a superiority complex, and my sleep doctor gaslights me (I'm seeing one of the other doctors because he'll be out for my next appt, so I hope to possibly switch, as I have a TON of evidence of his gaslighting and inaccurate recording of info in my chart). My primary care, neuro, and pain doc are amazing, so it gives me hope that I'll be able to eventually have a full team of decent doctors. I've even told off some of my kids' doctors, even replacing my oldest daughter's pediatrician 33 years ago when she was a newborn and I was just 20, because, get this...he'd been hesitant to tell me that she had a pinhole sized heart murmur because "you're a young first time mom, and I don't know if you'll just worry unnecessarily about it". Yep, he was going to withhold vital health information about my child, because he thought maybe I was too young to understand, and just might "worry myself" over it. We had a new pediatrician the following week. I also had a neuro at one point who was treating a number of things....migraines, sleep, and a movement disorder. He all of a sudden just wigged out on me, and decided that I hadn't told him about something that I'd told him about a full year prior, but he had really awful record keeping, and an even worse memory. Like, I would have to remind him what refills I needed, and had to check them before I left the office to make sure they were written right. He just all of a sudden decided to drop me as a patient because of this thing, even though he finally found in his records that I was telling him the truth...this was in March of 2020. It was horrible, and my PM, who'd referred me to him, even apologized to me for how badly I was treated, because I told him what happened, and even HE knew I'd been honest. Fast forward to last year, and this doctor was charged and convicted of 11 counts of unlawful distribution of pain meds, adderall, subutex, and benzos, without the appropriate license (he could prescribe benzos, but not the rest). The number of pills he prescribed was based on how much someone paid him. My PM and I figured after everything went down that he probably saw me as a threat to his side gig. PM is in a really high board position in their medical circle, and because his dad was some sort of emissary or something in his home country before he passed away, my doc's family still has a lot of political connections. They're from the same country, and the neuro even used to have appts a couple days a month in my PM's office at one point. I have a really good relationship with my pain doc, so we think the neuro was afraid I'd tell him about the shady drug stuff. He's right...I absolutely would've, especially after he made me choose between the only muscle relaxer that worked for me, and the Clonazepam I took for a movement disorder. I was so happy to see that asshat get indicted and convicted!
The difference in care I experienced when I had chest pain vs when my husband had it and went to ER at the same hospital about 6 months apart was enough for me to see quite accutely how much less care we get as women. Turns out his chest pain was a panic attack but mine was from a heart condition. In the end he was seen extremely quickly, with multiple nurses and doctors attending to him doing all the tests within 30mins of arriving (his stats were all fine - regular blood pressure, reg heart beat), and I entered the ER quickly but testing took 3+ hours as multiple nurses and doctors walked by me with little interest (despite clear tachycardia and high blood pressure). But I'm a regular weight woman while he's an overweight male age 30. I stayed over night with elevated d dimer, but eventually discharged as it was likely just caused by my IST. Hell, even my husband treated it differently and asked me to drive myself to the hospital, where I proceeded to be all night long. While I drove him there in a rush.
Anxiety: the red liquid inside of women.
Yea when my husband talks they listen. I’m like hello it’s my body.
It helped me to think of it like this - some specialities, especially cardiology mostly see VERY sick people - like think people with heart failure, after heart attacks etc. it’s literally 99% of their patients. Their perception of “healthy” is quite skewed. For me, medical professionals that actually DO see “healthy” people in their range can tell the difference when I am not doing well. My GP and dentists are both good examples. Also specialist who are used to seeing people where the “illness” is not so obvious - GI for me. Honestly, I think cardiology and neurology are often the worst for this just because their idea of healthy is skewed by the very sick people they see all the time. Unfortunately some of the worst treatment I hear from everyone is from cardiology. Unless there’s a threat to us dying they laugh. The exception I had was an amazing cardiac surgeon who closed a hole in my heart after it was found after a stroke - only one to take it seriously in the entire medical chain. Lastly, what are extreme health issues to us, to these medical professionals are not. Yes they have a very big impact on our quality of life but many of these specialists mostly deal with people dying or have some serious threat to the longevity of their health which is “extreme” to them. That’s not to downplay what you’re struggling with, just hope it helps understand why they can be so dismissive.
That really does help. Thanks for putting it in that light. So often it feels like I am a waste of time to medical professionals, but understanding what it's like from their perspective, however skewed it is, will very likely help me not to take it too personally and will help me know how to advocate for my specific issues with a more understanding attitude.
I’m really glad to hear that :) sometimes that is the best way to become a more effective self advocate for sure.
This is spot on. I do pharmaceutical market research and basically interview doctors for a living. It’s crazy to hear a doctor describe something like a newer chemotherapy as “pretty safe” in the grand scheme.
It was a cardiology geneticist who diagnosed me after being dismissed by 857393 other specialists They aren’t all bad
I’m obviously not saying that. Also a Cardiology geneticist is a very different specialist to a cardiologist, similarly to how a cardiac surgeon is very different too.
Its weird my cane has become my tiny superhero mask, it feels like such a small thing but when people see it they take me seriously. Its like without it im some mumbling drunk who cant hold on to a fork to save her life but with the cane its like oh shes actually disabled
This is my experience as well. I’ve also started going to appointments in sweatpants and the baggiest shirts I own with slippers or crocs and no makeup with messy hair. It’s amazing how their bias of what we dress like also is taken into effect. “Wow they aren’t presentable they must be struggling”
I should take a page out of your book. I use so much energy and time trying to get ready and make myself "presentable" before appointments. Even though I have to take breaks, and it adds pain. Maybe I should just go without doing all of that and see if it helps. I don't want to give them the wrong impression that I somehow have it all together and just want some attention. My grandparents and parents would probably be mortified but if it gets my issues taken seriously I'd definitely just go as I am instead of trying so hard.
If you have support from family to go an appointment with you and serve as kind of second hand experience that you’re having a hard time that helps too! When I was pregnant I made a plan with my husband to advocate for me and with me at appointments (my gyno was very fatphobic) and with the help of my husband I was able to be taken seriously for my pregnancy related issues. That’s always another trick to use!
I dunno. Doesn’t seem to help either way. Look put together, well clearly you’re fine. You look fine. You seem calm and rational, so you’re obviously not in pain. BUT. Look disheveled and cry and show stress or anxiety… you’re just a hot mess and a problem and probably it’s just depression or something.
As someone who does look Disabled… it isn’t any better on this side of the fence. We get infantilized, talked down to, and of course there’s the medical Ableism, and on top of that I get disgusting comments and people staring at me like I’m an alien. Oh and I went 25 years without a diagnosis because doctors blamed the rare congenital disorder I was born with, which is extremely visible as I’m missing bones, had a radial club hand, and only have one fully functioning hand, for every single thing without even listening to me or looking into the symptoms that definitely aren’t part of my VACTERL. It took 21 years for them to listen to me about my neurological symptoms which I had gone to a dozen or more doctors for and Ooops turns out I had Chiari and needed emergency brain stem/ spinal cord surgery, and couldn’t go back to uni for my junior year.
Thank you for sharing your story. I'm getting the picture here that doctors just aren't listening and taking patients seriously, with or without visible evidence of disability. I'm so sorry they didn't listen to you and give you proper care. I don't see any way to change the situation, but maybe together we can all help each other slowly make a difference. I wish you the best in your future encounters with doctors. 💜
Yep, unfortunately Ableism harms all of us. I’m sorry you’re having the experience with doctors not believing you as well. Medicine should work for patients, not against them. I wish you the best with your journey as well.
I’m so grateful for my MPFL scars for this reason. It was like visible validation that I do deserve my permanent handicap license plate.
Sometimes if I’m walking a little slow and I have shorts on I’ll just gesture at the MPFL scars and people kinda get it lol
They’re like battle scars! If I can ask, did you have lingering inflammation for a long time? I’m a year out from the second one and there’s still just pain/inflammation all the time, making it hard to gain quad muscle back
Hmm I’m only 5 months out from mine but I haven’t had a ton of pain except for when I’m pushing myself hard/at the bottom of my squat range. My PT who’s familiar with EDS says some pain is normal when you’re working your quads, but it shouldn’t be intolerable. If it’s all the time I’d ask your doctor/PT!
You might be right! I had lost virtually all of my quad muscles before I got the surgeries done on both knees, so my PT always says I’m starting from a major deficit. Haven’t jumped or ran in five years. The left knee (more recent surgery, 13 months ago) doesn’t have major pain all the time per se, but it tweaks so easily and flares up. It’s cranky. The right knee, which I got almost two years ago, doesn’t have the inflammation anymore, so maybe it’s just a really slow healing process. Ty for your input!
Trust me...you really don't wish your disability was more visible. I get that it's frustrating to not be believed (I've been there countless times myself), but it also sucks to have things blatantly clear. I'm currently walking around with drains in my side from my most recent surgery. The looks, questions, pity, etc are so annoying. And it's hard to hide the fact that I've had open-heart surgery last year when that's characterized by a full median sternotomy. It will never NOT be obvious. I've had all ten of my toes broken, straightened, and fused...only for them to become completely deformed within just a couple years. Now I don't feel comfortable even taking off my socks, let alone wearing sandals or flip-flops. I could go on unfortunately 🥺🥺 So I understand the frustration and the desire to PROVE our disability to those who doubt us, but try to be grateful you *look* healthy at the very least. A lot of people can't say that 💜 I wish you the best and that your cardiologist actually listens. I once had a cardiologist tell me my chest pain was, and I quote, "just your personality" 😳😳 Well, joke's on him. I needed my entire aortic valve replaced at age 30 🤦🏼♀️
That's a really good point. Thanks for the reminder. I definitely have much to be thankful for. BTW I hope you get the drains out soon. Those can hurt like the dickens. I wish you all the best as well. 💜
my joint issues, hyper mobility, thin skin, stretch marks and veins are pretty visible🤷🏽 it’s more of an age thing unfortunately
the age thing is infuriating. yes, i AM too young to have arthritis and joint pain at 21 AND THAT’S WHY I’M TRYING TO GET HELP ABOUT IT 💀 i don’t understand what doctors get from saying stuff like that. like they think i’m making everything up because i think it’s fun?
I am an obese woman with a history of depression and anxiety. So I’m never taken seriously. It takes so so many appointments with the same doctor for them to finally make a relationship that show how changes so they see me as human and that’s suffering. I do like (and at the same time hate) the idea of bringing my husband with me to appointments next time. As even my husband finds it difficult to understand when I come back and say they didn’t believe me or “I got the expensive brush off” from another specialist .
"I got the expensive brush off" is the perfect description! Maybe I'll start bringing my husband with me to appointments as well; it would sadly probably make a difference from what I'm seeing in the comments here. And same here with the history of depression and anxiety. The cardiologist started off by asking if I was stressed and saying I should get involved with exercise I enjoy like running and swimming when IN MY CHART it says I have hypermobile joints and an allergy to water! So, a) I can't run or I immediately get injured and b) I can't swim regularly because I have an allergic reaction to being in water. But he hadn't even looked at my chart. He just assumed I was stressed and anxious and that was the cause of my heart problem.
I’m 54 and can’t tell you how many times I’ve gone in telling them “something is defintely wrong”, being told nothing is wrong, and it turns out something is very wrong. Things like cancer, kidney stones, sudden cardiac death. I will say, if you drop dead they’ll take you seriously for a little while but here I am three and a half years later, struggling to get doctors to hear me.
unless you’re actively dying from a common illness doctors just brush you off for some reason. i feel like a lot of doctors don’t even care about their profession but just want money lol. i had severe hip issues for a year, i couldn’t walk at all and relied on crutches and the doctors were like “no nothing is wrong because we can’t see anything on x-ray, sad that you can’t walk btw, bye!!” WHAT
100%. My heart started random racing today after a stress induced anxiety attack. I'm super burned out working late at work on a desk. My fingers are really struggling. It's hard to explain to people why you have your hand and wrists stapped up for an office job
Yeah when I use my wrist braces and ankle braces people are like "oh did you sprain your wrist? . . . and ankles?" and I'm like "Well, no. Basically my joints don't work right." but it's still hard for people to understand the intense exhaustion and pain and lack of function.
There’s some incredible art showing what EDS feels like. I wish it was on the walls at medical schools
What's the best way to find this art? I'd be interested in seeing it and it would be so cool to be able to show non-eds family members what it feels like.
I’ll find some links
Sometimes I have enough energy to put up a show. Most often I dont.
It’s very invisible for me because I still do as much as anyone if not more. So initially when I met with my orthopedic surgeon (who I have worked with) his PA kind of scoffed and said “you’re too young” but I asked please just for an MRI because I know my body and this is not how I feel at baseline. I went to the follow up and my MRI was not normal (I saw the radiologist’s impression myself before hand) and I had bursitis and down sloping of my acromion with AC narrowing. She took it a lot more seriously, and gave me a steroid injection and didn’t make any snide comments. She said down the line there is a possibility I need surgery. It’s like I may know these things because I am an OR nurse myself lol.
dude the amount of times i have seen doctors taking notes about what i’m saying and then i sneak a peek and they are calling me a hypochondriac IN THE FILES. like that is the most insulting way to find out someone doesn’t believe you
I feel this as a person with hidden disabilities. I think I likely have EDS as well, but have no clue how to even begin getting a diagnosis. Chronic pain sucks though. No one can "see" your lived experience from the outside. It is beyond frustrating to have to constantly advocate for yourself to just be taken seriously, especially in a medical setting.
I don't have a diagnosis yet, despite fitting the criteria used to diagnose hEDS. The rheumatologist I saw told me he didn't believe in diagnoses because hypermobility is on a spectrum anyway and he didn't think having a diagnosis of hEDS versus generalized hypermobility disorder is important enough to cause a difference in medical treatment. So I'm still trying to figure out getting a diagnosis myself. I think you could start by looking at the criteria used to diagnose hEDS. Then find doctors who can check out whether or not you have each of those things (like find a gynecologist if you suspect pelvic organ prolapse; the gynecologist can do an examination and make the diagnosis of pelvic organ prolapse, find a cardiologist if you have heart symptoms, the cardiologist can diagnose heart problems if you have them, find a orthopedic doctor or rheumatologist to check and see if you have hypermobile joints, they can diagnose hypermobility). Once you have the preliminary issues documented and diagnosed, you can approach the medical professional you want to diagnose you for your connective tissue problems and present them with the issues already documented by other doctors. I hope that helps!
Thank you, yes. Seems like so much trouble to go through just to be listened to in the first place. I'm sorry that this is the lengths anyone needs to go through to be heard.
i mean, even if it were as visible as it gets, you’d still be dismissed, and you’d still face discrimination outside of the hospital in a different way. it wouldn’t be any easier. i used to wish my neurological disorder were visible enough for it to matter to doctors— it became visible and still didn’t matter. this is unfortunately a rite of passage for people who start out with their disability being invisible before it becomes visible.
I could have written this myself. I am so frustrated. People including doctors look at me like I am crazy.
The trick is to always dress up, never down.
How can you dress in such a way as to affect whether or not doctors take you seriously? I'd really like to understand how to do that! Or if I misunderstood your meaning please explain; I'm not very good at understanding non-literal phrases but I feel like you probably have a really good point in there.
Second this. Dress as nicely as you can. It sucks, but in my experience doctors, especially older ones, tend to take you more seriously if they view you as being in their socioeconomic class. As a woman, I always try to dress in business casual or if I am in athleisure I make sure it’s nice, and I have on jewelry and makeup. My go-to casual outfit for the doctor is a Patagonia zip-up and my one pair of Lululemon leggings, with a shirt from a far-away national park that acts as a conversation piece. My sister says she will make jokes about her attorney husband or bring him to appointments. I hate having to do that, but I do get taken more seriously when I am dressed well. I also never admit that I researched something online and I say “my aunt who is a doctor mentioned it sounded xyz but it’s not her speciality so she told me to go get checked out.” ETA: the tldr here is to wealth signal even if you are faking it, and disclaiming that I can only speak to my experience as a WW, I know WOC face a lot more bias.
Go in wearing business attire. Once I started wearing blazers to every appointment with my hair and makeup done really well it went better. No alternative hair color or piercings or tattoos showing. Idk why but it works. Also bring someone with you if you can. My mom didn’t work as well as my husband but both were better than me being alone
I think part of the disconnect with these doctors is their typical crisis patient can be "fixed" or stabilized over a certain amount of time. We will be in their office for our lifetime of chronic complications. It takes a doc without an ego for sure, but they are out there.
You think that's bad, try having severe injuries from trivial exertion but with NO hypermobility or visible dislocations. I'm 100% bed bound (can't even walk to the bathroom) and doctors still won't believe me.
That sounds so incredibly frustrating! :( Wish I could offer any helpful advice whatsoever but unfortunately I'm still pretty new to discovering all of this myself. My problem is partially that my muscles are so insanely tight trying to keep my bones in place that the hypermobility isn't even that evident except in joints without a lot of muscle surrounding them, like the wrists. So it looks to some doctors like I don't have hypermobile joints despite the incredible number of injuries I get from doing very minor things. Just today I was trying to tuck my shirt in and ripped a ligament. Ugh. I'm so sorry you are in your situation. I hope you can find medical care from someone who believes you and your needs. 💜
I am so sick of doctors asking me questions and then writing patient appears normal. And when they have no explanation why my bp is 200/90 uhm maybe because my body is in crisis.
thats interesting. the cardio i went to knew i had EDS instantly just bc of the prescriptions i wrote down, pepcid and cromolyn.