doctors will literally cause us immense harm every time we leave the house and then construct agoraphobia as disordered

do you have any thoughts on functional neurological disorder?

it’s one of the cruelest inventions of modern medicine.

for a bit of context on my positionality i don’t currently have an fnd diagnosis but i am at huge risk of one (my rheumatologist already thinks i have a conversion disorder) & it’s one of the many reasons i’m terrified to pursue a second neurologist after my first one dumped me. fnd is, like, maybe not the pinnacle but definitely a major player in the field of doctors gaslighting us as hard as possible & being furious every time it doesn’t work.

i’m not gonna find these articles bc it gets to a point of self harm for me to (re)read some of this shit but literally doctors are like “the more convinced patients are there’s something wrong the more they’re lying,” “the more symptoms patients have the more likely it is to be fnd and not something really wrong,” etc. again just unfathomably cruel. also the fact that mainstream medicine can unironically write that people with hypermobility are “more likely to have fnd” rather than going huh maybe there’s a neurological component here is just. what the fuck are y’all doing.

a really fun (fucked up) “i told you so” moment with the social construction of the ‘real vs fake’ tics false binary was when doctors literally can’t tell the difference based on their own bullshit criteria.

i highly recommend checking out @fndportal for incredibly insightful thoughts on a lot of these issues. sociological research on post-hysteria diagnoses & the genealogy of hysteria has also been super helpful for me although it’s obviously a very difficult history.

on a peer support level i think disability community is especially vital in the face of these kinds of psychological warfare from doctors. & to anybody who’s been diagnosed with fnd or similar conditions: i believe you. something is really wrong, it is not your fault (& it would be okay, & you’d still deserve effective compassionate care, if it was), you’re not making it up.

obviously i personally want to destroy the whole thing from the ground up, but if i could change one thing about the medical field, it’d be that it needs, desperately & urgently, to create space for not knowing. to say “something is happening here but science hasn’t caught up with it yet.” …unfortunately, to do so would be to destroy medicine from the ground up, because the whole project is predicated on the manufactured authority of knowing our bodies wholly & irrevocably, of rendering our own knowledge irrelevant at best & lies at worst.

also imo cbt, especially for a physical symptom, is evil & in situations where people can ghost their doctors rather than go i wholeheartedly support that.

"how badly can it go," ze said, "it's just a medication review," forgetting that doctors hate zem and want more than anything to tear zyr flesh from zyr bones

why are you lying to your doc because of conversion disorder? not at all judging, just curious

i’m not sure how much info you’re coming into this with so, “conversion disorder” is the label doctors created because it’s faster than saying “we hate you & think you are making everything up because you are evil / insane / both.” so if a doctor starts gazing longingly in that direction (“you should try seeing a psychiatrist about your involuntary movements”) you should flee or, if that’s not possible, lie like your quality of life depends on it. because it does.

hiii!! i was wondering if u have any advice on getting taken seriously and getting care in an emergency department as a chronically ill/disabled person?

i've had progressive muscle weakness, fatigue, nerve issues, and pain for like five years that hasn't been properly diagnosed (been told it was fibro but. doesn't seem to fully fit that anymore. idk if anything will show up on tests but even if it doesn't i feel like the more correct diagnosis would be ME. my current gp thinks i have [seronegative] myasthenia gravis but gps can't order emgs so can't diagnose it), and recently have been having trouble breathing that seems like it's due to muscle weakness in my chest and follows the same patterns as my other muscle weakness.

my gp can't do anything to help (and referrals always get declined because the system is overwhelmed) and can only advise that i go to the hospital, been to one hospital who sent me home because my oxygen saturation was fine (even though from what i've read shortness of breath caused by muscle weakness doesn't show in oxygen saturation til it's Very Very bad, at the time i could only speak a couple syllables per breath and my peak flow was around half of what it usually is), i asked my gp what to do and he told me to try the further away hospital and explain that i haven't been able to get care at the closer one.

my mum is going to take me in a couple days (unless i really can't breath in the mean time obviously) and i'm nervous because i usually get dismissed, or they'll do a couple tests but not the ones that would actually show the conditions that i might actually have. i don't know how to advocate for myself without getting seen as overreacting, or get care for a chronic condition that has become urgent because usually if it's been happening for a while they'll say to just talk to ur gp but. my gp can't do anything.

(note: i know ur only supposed to go to the emergency room for things that are really urgent and the fact that i'm waiting a couple days might make it not urgent. my gp has said this is the best thing i can do though because there's literally no other avenue for me to get care and with my breathing the way it is i am even more restricted in what i can do than i have been before.)

oh god, i’m so sorry you’re in this position and am sending so much love to you. obligatory disclaimer that i’m not a medical professional, just Some Guy with a couple degrees, a girlfriend in medical school, and a whole lot of medical trauma.

that being said, my only advice is to lie. lie your ass off, lie like your life depends on it, most importantly lie in an informed fashion - which is easy in this case because you pretty much know what you have, you just need them to do the test you want. the doctor thinks they’re creating a clinical picture on a blank canvas and you need to give them a paint-by-numbers.

here are the factors i would consider and the narrative i would construct if i was in your position, but it’s your body, your experiences, and your care (or lack thereof), so all of this is just my opinion and your mileage absolutely may vary:

most importantly, make sure anyone with you in the ER is on the same page. a lot of doctors assume patients are lying by default because they suck, so if somebody contradicts you, you’re probably screwed. when my gf takes me to a doctor’s appointment, we have a “what are we lying to them about” meeting ahead of time. you know your mum best, so you probably know what approaches she would/wouldn’t be on board with, but i’d initiate that conversation like “i’m concerned this hospital might dismiss me like the other one did, so i’m planning to say XYZ to hopefully get them to take me more seriously” and not “Some Guy on tumblr told me to lie my ass off” lol

next, make your symptoms match the textbook. downside to this, i definitely recommend not bringing up ME/CFS because they can’t/won’t test for or treat it (i have a friend in the UK who almost certainly has ME/CFS and just got sent to even more physical therapy). here’s where it helps that your GP is pretty sure they know what you’ve got (whether you actually have that or not): research myasthenia gravis (i recommend continuing education sites geared towards clinicians), know what’s on that list, and (with some exceptions) say you have those symptoms. my personal strategy is three-tiered:

lies of creation: unless it’s something immediately life-threatening or something they can concretely disprove, say you have symptoms of your disease even if you don’t. ER doctors don’t give a shit if they can say you need to wait it out and go to a specialist, regardless of that being unrealistic and your symptoms being unlivable, so you need something urgent and serious. (my gf says “they might be worried if you’re having trouble swallowing. maybe.”) myasthenia gravis typically waxes and wanes, so even if you’re able to do something when they examine you, it would be totally realistic for you to not have been able to a couple of hours ago (eg, when you arrived to the ER). for example, i told the NHS i totally had a positive MRI in the US that i was having delays getting access to the records of, even though my MRI didn’t show a speck of inflammation, because at least that got me a couple months of flare medication while they confirmed and an NSAID when they decided i was in remission rather than literally nothing. obviously you can’t tell them you’re seropositive because they’ve unfortunately got that record, which means you’re already fighting an uphill battle, which leads to my favorite sub-category lie of creation: anything you’ve read or believe or know that works in your favor, your GP told you. memorize what percent of people with myasthenia gravis are seronegative - don’t lead with that, because doctors hate when people are educated about our conditions or know what’s wrong with us, but if they say “we won’t do an EMG because you can’t have myasthenia gravis because of your bloodwork,” then you can be like, “my GP said that’s pretty common, like, about X% of people don’t show up on the test, and they’re really convinced i have this.”

lies of exaggeration: increase frequency of symptoms, impact on your activities of daily living, rank on a scale. familiarize yourself with what the numbers on the pain scale generally mean in terms of ability, and elaborate - “my pain is at an 8, it’s really hard to XYZ.”

lies of omission: this ER doctor was an asshole and still would’ve fucked me over regardless, but the instant i said “yes” when he asked if i experienced acid reflux, he stopped listening to a single word i said. i was experiencing acid reflux, and i knew that symptom happened with IBD, celiac, and a host of other serious conditions, but he instantly decided that was all that was going on with me, tried to send me home with just an antacid during the worst pain of my life, and led to me experiencing malnutrition and all my hair falling out due to the severe delays in accessing care. my recommendation for “instant dismissal” (or worse, “instant institutionalization”) symptoms to omit are: acid reflux; menstrual cramps or really anything related to menstruation; anything they could dismiss as covid - if they try to dismiss your breathing issues as covid, say you’ve tested negative this week even if you haven’t had a test. if you’ve had covid and you’re certain it’s not in your chart (assume it’s in your chart if you’ve ever said it to a doctor), say you’ve never had covid. if they still try to say it’s covid, stress that this has been going on for years before covid; anything psychiatric.

so, what i would do:

“i have X, Y, and Z symptoms. my GP thinks i have myasthenia gravis and is working on referring me, and said to go to A&E if A, B, or C got worse. A, B, and C have [measurably gotten significantly worse since the last time you went to A&E] - i’m having trouble breathing, swallowing, and [other].” hope that they decide to do an EMG on their own.

if they try to send you home or try to do useless tests, say “my GP mentioned that i really need an EMG in order to get the treatment that would help me be able to breathe, swallow, [other]. will this test also do that?” (one of the instances where you strategically ‘play dumb’ because doctors hate when we know things)

if they still won’t do anything helpful, either you or your mum say: “i’ve/they’ve had these symptoms for five years and it’s never been remotely this bad. i/they seriously can’t breathe, swallow, [other] - how do we manage these symptoms before we can get to a specialist?” i’m white and, having been super professional/polite until then, this is the point where i start crying; you know your circumstances best and whether that will incur racism, etc, upon you from the medical system.

if they still want to send you home, i (again, being white) would at that point firmly request a second opinion. they still might send you home with nothing; i did all of this shit and received 50 pills of 50mg tramadol in addition to the antacid, and probably an angry note in my file, and not a millisecond of further testing.

i say this with love and from experience, in the interest of minimizing trauma and devastation: you need, to the best of your ability, to go to the emergency department with the expectation of receiving no care. i recommend a buddy, a reminder, and a reward: message a bitter crip or someone else who Gets It throughout the process and have support in place for if/when you get home with new medical neglect and trauma; remind yourself that your symptoms are real and serious and, in my gf’s words, “if your GP thinks you have myasthenia gravis, you almost definitely have something neuromuscular going on.” i like to make posters of my reminders (example here: link); do something that will make you feel better afterwards - my go-to is buying a new stuffed animal after experiencing medical trauma. i have a lot of them lol

for more advice on coping with medical neglect before and after appointments/visits, see my post here (link). if you don’t know anyone who’ll understand or be available and helpful to support you during your trip to A&E, feel free to dm me and i’d be happy to give you my WhatsApp. i wish you so much luck and you’ll be in my thoughts, i really hope it goes as well as possible - you deserve quality, compassionate, thorough care. if you’re comfortable with doing so and feeling up for it i’d really value an update afterwards 💓💓💓

every AS doctor & organization & information packet & fucking influencer: back hurty disease

actual goddamn research on AS: uveitis, enthesitis, neuropathic pain and associated brain changes, myositis, grey matter changes in the brain due to fatigue, impaired balance (not associated with posture), hearing loss

stats for the past month:

specialists’ appointments: 6

vials of blood drawn: 12

24-hour urine collection test: 1

x-rays: 16

ultrasound: 1

MRI with & without contrast while under sedation: 1

medical phone calls made: 37

medical gaslighting experienced: ✨incalculable✨

i can’t think of a convenient filtering tag to provide informed consent here so like, content warning for doctors being deeply cruel in a way that could both be triggering and exacerbate (completely justified but probably distressing) anxiety around being disbelieved, mocked, etc

by far more upsetting than the whole “my body has decided to move without my permission” thing is that last night i asked my gf if she thought we should take a video of what was happening and she was like “in the interest of not being complicit in giving you more medical trauma, as someone who’s shadowed in neurology, if they don’t think there’s something wrong they’re just going to laugh about it in the break room.”

gf’s med school curriculum said “there’s never a hurry to nutritionally replete a patient.” they literally try so hard to stomp the compassion out of you

my gf’s med school curriculum is teaching to not give people in the emergency room with vitamin deficiencies due to alcohol complete iv vitamins (a “banana bag”) but rather just thiamine & saline.

this can be an issue for people experiencing alcohol-induced vitamin deficiencies and also potentially for people who may get mistaken for being drunk due to disabilities (such as ataxia).

the idea is that it’d be wasting money to y’know actually fucking treat addicts because the issue may reoccur. policy ofc varies by institution but just be aware if you or someone you know suspect vitamin deficiencies

Do you have any advice on navigating specialists? I have been experiencing pain in the mid to lower back, hips, and legs for years. But when I saw a rheumatologist and it was a day with no pain, she pretty much just did an MRI and x-ray, and when nothing showed up told me she couldn't help me. I feel that there should have been more investigation, but without anything showing up on MRI or xray, nobody seems to know what to do with me.

i’m sure people try it, and maybe/hopefully some have been successful, but i personally don’t have any faith in trying to convince a doctor who doesn’t believe in nonradiographic and/or seronegative disease that it’s real, so this post is gonna be about finding a doctor to get a second (or third, or so on) opinion.

i’m in the US so i’m gonna assume you’re in a similar system where you access private care / have choice over your provider; for my (very limited) experience with seronegative nonradiographic AS in the NHS, see this post (link) but it’s more about the process and less advice.

unfortunately this is super time-intensive but my process is as follows, assisted heavily by my girlfriend:

we pull up the list of providers covered by my insurance. i open a new spreadsheet.

we go through the list systematically. we check 1) google reviews, 2) reviews on the insurance website if applicable, 3) the provider website.

automatic exclusion criteria: mentions exercise on their website, any patient review says the doctor didn’t believe them, any patient review discusses not being informed of significant treatment side effects. less specifically skill-related and more personal comfort but i also exclude doctors who discuss their christianity and/or military service on their website.

criteria to increase someone’s ranking: website: mentions the conditions i have and/or think i have, mentions pain relief as a priority, discusses importance of staying informed with latest research, has thorough and accurate patient education info. patient reviews: were diagnosed with multiple conditions (especially when previous doctors only considered one), were diagnosed while seronegative and/or nonradiographic, were diagnosed with a rare condition, say the doctor gave them options / asked about and respected their preferred treatment or lack thereof, doctor advocated for them to insurance / work / etc.

i rank the people i haven’t excluded in the spreadsheet, enter their contact information, and go down the list until someone has an appointment available in the time frame i need.

other potentially helpful sources are patient recommendations (with justification) from facebook groups, twitter, tumblr, and probably other sites that i don’t know how to use because this is my only active social media. i think some communities have crowdsourced lists of decent providers and i’m happy to reblog any that folks use.

i’m also happy to post doctor recommendations and requests here if anyone wants to send me endorsements or requests! i would ask that you keep any asks with identifying information such as your location on anon for your privacy & safety :)

you might’ve already seen it but i’ll also add my post (link) about navigating appointments and coping with / resisting medical gaslighting, and my faq tag (link) has more validation & info that might be relevant for you. your symptoms are real, tests including imaging do not tell the full story of disease (or any of the story, for many of us), and i hope you receive quality, compassionate, and affirming care ASAP 🖤🖤

today in Blatantly Discriminatory Content in My Girlfriend’s Med School Curriculum: powerpoint referring to the imaginary patients as “a nineteen year old boy” versus “a seventeen year old woman”

were it not for the chronic dryness i’d be crying over this article (link) showing increased prevalence of hearing loss in people with AS... i fucking knew that was happening to me but no one wants to tell us shit about our disease!!!!!

(btw yes i’m still working on the “what your doctor didn’t tell you about AS” factsheet, i have some time now so i’m hoping to have it up within the next month)

hi hope you are doing well 🌻 wanted to ask you if you have any experience with arguing with doctors/medical professional/doctor apologists (hhhaaaahaa) online? i know it is a silly question, and arguing online is silly anyways, and yet. sometimes I see awful takes (for example, doctors speaking about patients as if they should worship all doctors and never complain) but if i try to advocate patients rights I'm immediately confronted with "how would you know anything? you're not a doctor! you don't know how hard it is being a doctor! and dealing with...... patients!!! (derogatory)"

anyway,, any thoughts about this?

hey thank you, i hope you’re doing well too! to be honest, i choose to direct my (limited) energy into peer support of other disabled people & sometimes education of people who want to learn. so while i definitely think there are instances where it’s important to challenge the medical establishment & its rhetoric, ableism, etc, i think my approach would probably be more in the interest of letting other onlookers know that there’s another way, rather than trying to change the minds of people outright supporting these systems, if that makes sense

side note, i’m obsessed with the phrase doctor apologists, definitely picking that one up

but yeah for me tbh everything is informed by being a self-identified born-in cult member so i’m personally of the belief that no amount of information can make someone reject an abusive system before they’re ready, just from personal experience. that being said, there are definitely so many seeds of ideas & liberation that might not be acknowledged in that person until years later when they think about what you’ve said under a different understanding - unfortunately, possibly when trying to make sense of their own experiences of medical neglect & abuse

idk if any of that is helpful at all lol, again definitely not a prescriptive opinion just the way i personally navigate things. wishing you the best & please take care of yourself in these interactions as much as you’re able 💕💕

babygirl i can have symptoms your doctors wouldn’t give a fuck about

doctors when you’re in unlivable pain, cannot perform most if any of your activities of daily living, have visible joint swelling and stiffness, and have elevated inflammatory blood markers: actually you’re in remission :) even if we did prescribe you a medication, which of course we won’t, it wouldn’t do anything :)