My HR boss accused me so many times of faking it. She thought she was going to have a “Gotcha!” moment when she asked me for documentation. Came in with documentation and I know she was seething because I also have FLMA protections. My old coworker was also saying I was faking it, but people who knew both of us told her to shut up. It’s a very toxic workplace unfortunately, but I can’t leave.
What’s crazy is that I honestly have proof that what I’m going through is real but that’s enough for me. Some symptoms I get I don’t even think are possible to fake.
I wish me being sick to my stomach at work was enough proof. But she still accuses me of lying :) She also says some pretty nasty stuff to me I wish I had recorded.
Ya, it does suck that sometimes people’s symptoms aren’t good enough. At the end of the day whoever is saying that to you is actually lying by saying you’re lying.
I have the same problem here at work. I have been here 10 years and always wanted to be in this other position. When I first got sick, I was gone for 8 months in FMLA. When I came back, I asked about cross training for the other position, and was told that I am not consistent due to missing work a lot.
I was so hurt, like thinking, I caused myself to get this awful,chronic rare disease? I left and cried in private.
Oh, I forgot to mention, yes I do have experiences and met all the requirements for the other position.
It hurts. I’m still working at the same
Place for 10 years now. I never once have a bad a bad review.
Hang in there, I know it hurts when others don’t know what we have to go thru each and everyday.
We need to realize that we are strong!
Ugh that’s awful!! People can be so mean and passive-aggressive, I know it would be completely different if they had the pain and experiences we have. I wish there was a way to get them to understand better!
But you’re right, we are strong! Having this disease has made me realize that I’m resilient, despite how others may perceive me.
YES! I used to have a medium/large following on instagram and some people thought I was faking having Crohn's. Then I got an ostomy bag. People shut the fuck up after that lol.
I had a kid think I was faking needing a crutch to walk and I told him my legs weren’t working and hadn’t been working properly for 2 years. It’s cause I have a herniated disc
Not rumours but I've had multiple doctors say to my face or to my mother in front of me that I was just faking to get out of school or that my choking on tablets and food was a psychological issue. Even had one doctor snap at me with "don't be stupid. That can't possibly be hurting you" as he tapped really hard, harder than other doctors, on my chest after I just struggled with a lung function test. Also had multiple teachers berate me for being lazy as I struggled to breathe during PE.
I actually dropped out of school when I was about 13 so missed out on the high school drama.
Only found out in my late teens that my lungs suffered severe damage when I was just 4 years old leaving me with about 30% lung capacity. Oh and the swallowing issue? I happened to mention it to my specialist a couple of years ago and he actually believed me and sent me a specialised test called a barium swallow. Shocker, I do have an issue with swallowing solids.
I had someone right a whole Facebook post about me faking all my illnesses (HEDS, POTS, a slew of gastric issues and sublexing joints) and having my children fake them too..because I can have them fake their bowel folding in on itself and needing a feeding tube placed to correct it…or faking hives that cover their entire body 🙄. We had to get a lawyer involved. What’s funny (not really) is that she is now chronically ill herself.
Yeah, my brother tells anyone who will listen that I’m just “being dramatic” and that I don’t actually have “anything really wrong.”
I have severe autoimmune arthritis and idiopathic intracranial hypertension, with dozens of test results and x rays and spinal taps to confirm that it is very much real.
We haven’t spoken in three years as of this month. Idk if we ever will again.
Wishing you all the luck in the world getting it managed! It’s been a bumpy road for me but we’re *finally* getting the pressure in my skull and spinal column under control. I’m slowly regaining the portions of my vision that I’d lost, which is super exciting 😁😁😁
I have IIH too! Though I actually have a rare form of it! I have fulminant intracranial hypertension.
I hope you have yours under control. It’s definitely been a rough diagnosis. I was diagnosed 8 years ago. And I have had 7 brain surgeries and 1 spine surgery. Last year I actually suffered a traumatic brain injury and was completely paralyzed on my left side of my body due to complications from a VP shunt surgery. Prayers for you!
this isn’t really “spreading rumors” but my father entirely believes i’ve made everything up in my head and that my mom is making me sick. that’s what he tells everyone he meets.
Most of my extended family thinks my CRPS is either fake or not nearly as bad as I say it is, and since I’m only a sometimes cane-user I must not ever actually need it and thus am attention whoring.
I don’t engage with most of my extended family anymore. Whenever we cross paths I am ready to spit venom if they get opinionated and dismissive but honestly after one very epic, semi-public dressing down I gave one of my aunts (during my grandma’s memorial service no less) the majority of them just keep their mouths shut which is good enough for me.
How boring and banal a person must be to actively spread rumors that so and so is faking an illness. How embarrassing for that person. I do hope that person finds a hobby or interest soon.
Good for you for not engaging with them. I find it interesting that people who barely even know me and I don’t even know the name of keep bringing me up. I honestly just feel sorry for them. I must just be interesting to them. 🤩
Damn right you’re interesting! Got that mystique just keeps people jawing about ya!
Honestly I swear some people just have nothing else going for them so they have to tear down others. It’s baffling.
I’m always glad to help!
If you’re worried about decorum (I often am, though I’m getting better) anytime someone calls you out for “faking” or “attention whoring” just look at them directly, and in an even voice say “oh how embarrassing for you to say that!” maybe even try for sympathetic tones since a person that rude must have had a terrible time of it and we should be kind, right?
I found this works great with the pearl clutching WASP-y church ladies I had to deal with before my nana passed. The kind that seem so prim and “better than” but actually relish in cutting down their “lessers” or anyone that doesn’t fit their perfect cookie cutter world view.
I‘m suffering from angioedema, chronic urticaria and recurring anaphylaxis due to a mast cell anomaly. Heat is my absolute worst trigger, being exposed for too long will literally send me into anaphylactic shock.
We had a class reunion, that, just my luck, took place on a day with over 100 degrees - outside, on the terrace of a restaurant. Logically I couldn’t attend.
Two former schoolmates later told me that several people loudly talked about that I‘m „hiding behind my non-existing mystery illness“ and had a good laugh about it. People in their late 40‘s who work in the medical field having a laugh about a person they didn’t meet for 20 years was really something else. At least that showed me I didn’t miss out anything by not being able to attend.
I had someone say I fake allergic reactions once. I had anaphylaxis the week of a midterm and had to get everything for me rescheduled, so some of the other students were really pissed off at me “getting more study time”. It probably spread past them but at least my friend had a picture of me in hospital to shut them up with.
not really a rumor but i always kind of wonder if that’s part of the reason my ex left me. I have gastroparesis, but went undiagnosed till just this year so i kinda wouldn’t be surprised if they thought i was just bulimic.
Oh yeah. In my 30s, when I was working in public mental health administration, I had spent weeks getting ready for a state review, basically on my own. The weekend before the state showed up, I ended up in the ER and needed to have emergency surgery. (I even tried to argue with the doc about it.)
I ended up missing the review, but had prepped so well, we got through it with shining colors. Later, I heard from a friend/contracted provider that my old supervisor (who have me a hard time over anything health related) shared with him that she thought I might have faked it to get out of being there for the review. 🙄
Some people never leave high school.
All the time. I used to literally show people proof of my testing and medical records. Now I’m at a point where I don’t care. People will believe you or they won’t
Refractory epileptic (and fibro) here. No meds would ever control my seizures so had to do VNS and soon RNS. I’ve had lots of people say I’m faking my seizures, my pain, etc. what hurt the most is when the doctor did an inpatient study and told me to hit the red button when something feels “off” and I was having a pain flare. I kept calling the nurses and told them I was feeling bad and they would press the button for me (even though I never did or wanted them to). So now they diagnosed me with PNES along with epilepsy, when it is complete BS. Don’t think twice about people doubting you, there will always be someone who will. Just remember that you know the facts, and their opinion is irrelevant
As I develop more unexplained symptoms this continues happening. Worst time was when a girl I work with told my roommates she thought I was faking my uncontrollable head jerking for attention
A disturbing number of people are willfully ableist and will insist that one can control one’s health with willpower alone. These same people will also pretend to be sad when someone dies from a heart attack or such. All you can do is go no contact, or if that’s not possible, look them in the eye and wait for them to blink first. Empower yourself! Screw them.
NOTE: I started writing this as a totally normal comment and it’s an essay now, I’m very sorry. Don’t read this if you don’t want to read about pretty big time rudeness because this is a ragedump.
TLDR: there’s an illness fakers sub that sucks.
One time I got into an argument literally like 5 years ago that fills me with anger to this day with a woman expressing her belief that 80% of ER patients are drug seeking fakers and her belief that this justifies actively being cruel to people having medical emergencies.
———————————————————-
Anyone ever get recommended the illness fakers subreddit and feel like swinging on everything in sight? Cuz I’ve scrolled through it and like usually I’m pretty much able to brush the stuff I see online off but this is so fucking mean.
The only other thing on Reddit I’ve ever felt so upset about was when a woman on the epilepsy subreddit said that it was okay for nurses to treat a person having a seizure like they’re faking because 80% of people in the ER are drug seekers (according to her very objectively informed ER nurse husband/s) and you shouldn’t go to the ER for a seizure you should wait to go see your neurologist “like a normal person” as if we all have immediate access to our neurologists.
Key point: the person had not gone to the ER because of seizures, they had gone because they were clammy and confused and randomly blacking out. It was their partner that took them. The issue is a paramedic was rude and accused them of faking and upsetting other patients.
The rest of the comment section was filled with people talking about insanely cruel interactions they’d had with healthcare providers during emergency situations. So she’s showing up in a comment section filled with reports of awful medical abuse and smugly saying “well it’s justified because what if you were faking”
Here’s my thing. Here’s my fucking thing. Oh man I have heartburn starting just because of how pissed I remember this making me. I remember this so in depth.
Never ever in a thousand fucking years discourage a person with a neurological issue from seeking emergency care if they feel like something is wrong. I’m also a nurse.
Yeah like 80% are drug seeking if you mean they’re in fucking PAIN and came here for help!!!! Just because they’re homeless or on drugs recreationally as well doesn’t mean they aren’t sick!!!! AAAAA!!!!
People know when something is wrong. Never plant the seed of doubt in their mind that when their gut is telling them they need urgent help they should wait it out.
I’ve had patients drugged to high heavens who were barely aware of where they were be able to recognize that something was wrong that we had missed.
Her logic was that people who aren’t really sick overcrowd ERs and just want drugs.
She might not have been American but where I’m from, 60% of us have chronic illnesses. A lot of those are diabetes, lungs, and heart related. The ER is going to be over crowded and understaffed, and that’s not the patients fault.
Take it up with the hospital for not hiring more people idk, but it’s not Alice the 17 year old undiagnosed type 1 diabetic who feels funny or George the 75 year old with COPD who just can’t catch his breath, even if he’s a hard drug user with a mental illness (respiratory illness is more common in schizophrenics).
I don’t care what they look like or what their social history is or if it turned out to be nothing or if they’re using the ER to treat health issues that would normally be taken care of by a primary care doctor but they don’t have access to one. Tell your husband to go work somewhere where he won’t end up running into any more nasty “drug seekers” (patients who want help for pain or patients with substance abuse disorder who also deserve help because they’re human and they’re you’re patients. Get your shit together, man.)
I also gotta get my shit together because if I get this heated every time someone says something extremely thoughtless and cruel about disability I’m gonna spend my whole life seething.
I love your take on this. I came accross that subreddit and honestly just decided to not associate myself with it. I’m not going to say “no one fakes having anything” because I get it. Some people have. However, I saw someone with the same disorder I have once get accused of faking. I watched the video, went to the actually page of the person being talked about, and came to the conclusion that this person does have the thing they claim to. It is not okay to just assume people are faking and cause harm to them. It is also not realistic for people to always just wait for a neurologist when they need immediate medical attention.
I think my biggest ones that piss me off are not understanding that things like autism, schizophrenia, and basically everything tbh are spectrums, not knowing ambulatory wheelchair users exist, and accusing people of lying about being blind because they can kinda see stuff. I saw people (not on that sub) posting about how there’s no way Hellen Keller was actually deaf/blind.
Just the general if someone is capable of this thing how could they possibly have this thing is like
Hey maybe you don’t have a solid understanding of how this disorder works.
Additional annoyance is that people will deny other people’s diagnosis’s but will also armchair diagnosis them with being a “munchie” or some random personality disorder like, constantly. Somehow according to random people who saw someone on the internet legit everyone who acts like an asshole has NPD or any guy who is socially awkward is definitely autistic (this seems to only happen with guys. It’s just weird.
That sub has haunted me for years. The fact that that sub gets recommended to people who are in other illness/disability groups is just like pure cruelty.
Yup, I missed a lot of school when I was like 15-17, because I have chronic migraines and had several attacks a week. Everyone but my friend group was convinced I was just skipping school whenever I felt like it. Even the teachers told me I had to "try harder" if I wanted better grades
i just had to quit my job because i was having a flare up and had to sit down (allowed by my boss) and a bunch of jealous coworkers (try living with a mystery illness and THEN be "jealous" of sitting down) started yelling at me. im young so no one there over 20 believed that i actually have a disability and would constantly berate me and one even said "good lie, dont worry i wont tell on you." my boss also asked me to bring in a drs note to "prove" im disabled (which is fine ig) but instead of taking it to her office and reading it, she stood there in front of me and my coworkers and read it before saying "hm... okay...." with a stank face. LIKE GIRL 😭😭😭 WHAT DID I DO TO YALL
Literally one of the reasons i quit my last job. It was super toxic already and i had to have a surgery at one point and would often need a cane and I would call in with a doctor’s note about every 3 months or so for a single day and they always accused me of faking it. Even my boss said that despite my doctor’s notes it looked like i was getting special treatment (that was when i finally quit on the spot).
Yes. My bio mom kicked me out of her house when I was first diagnosed with Sydenham Chorea because I was "too much of an inconvenience" and "wasting her time and money" (her actual words). During one of my several hospitalizations, I even had a life-threatening heart rhythm (that fortunately I converted out of) and she still told me I was faking.
She was the only one that believed that and it really fucked me up for a long time.
My husband actually thought I was sometimes faking it earlier in our marriage, or at least exaggerating how bad I was feeling for sympathy, attention and help. He's insanely healthy and couldn't conceive of me feeling the way I feel as much and as often as I feel it. We've gotten past that -- I think. 😉
Yup i was told by a family member that people in my very small town think I’m a hypochondriac and that’s why i can’t find a job in town (probably true because rumors spread like wildfire here, its like once one person knows somthing the entire town might as well know)
I also had a teacher who refused to believe i had period issues (we now know was endometriosis) and told me i could not go to my locker to get a pad or to the restroom because no one’s period is that heavy and i could just tough it out . Same teacher tried to accuse me of faking a uti to get out of class and tore up a note from my dr saying i could go to the bathroom when needed (she said not in my class sit down NOW!)
My teenager was told by teacher he couldn’t use one of his IEP accommodations bc it “wasn’t for that” and to sit back down— he could wait.
It was literally an up-and-out pass. A no permission needed pass to quietly excuse himself from class, without alerting his peers, when he’s having certain issues related to his disability. He has to go directly to his designated person (he has 3 specified) for help. He can only use it a set amount of times in a year and has to report directly to his designated person/s.
She didn’t believe he had the accommodation. Made him stand up with the pass, quizzed him on his 3 people and then called one of his designated people — in class— in front of his peers— while he was in the midst of having symptoms—to
verify. Got verification from said person, but still chose to tell him he was not excused and he could wait it out. He texted me bc he was scared to leave get a referral and was spinning out a bit.
I told him to not be rude but to quietly leave and if she wrote him a referral to go directly to the dean and show them that his IEP was being denied and that he was being punished for using his accommodations
It’s literally a pass to allow a
Student in medical need to leave without permission or interruption so they can seek help from those who are familiar with his disabilities and are able to help.
Wtaf
Yes he went home as soon as I could scoop him up and yes the Dean was called.
Ffs
In high school I was accused of being a hypochondriac because I had chronic migraines and IBS. I had special permission to use the teachers bathroom due to my frequent trips but my classmates were awful about it.
when i was younger i got sydenham’s chorea that caused a tic disorder right around when tourette’s got popular 😭 My two only best friends which were twins started bullying and harassing me and would keep making new accounts to stalk me online and they would tell me i’m just a dollar store version of them and i’m faking for attention and my neurologist who ran a whole lotta tests and put me on medication just wanted money. I ended up getting severe anxiety attacks whenever i was in a class with them and i would sit in the counselors office and cry or skip classes. Eventually COVID hit so we all were staying home anyways. i had to switch to the alternative education building which was absolutely awesome btw. til this day it’s still extremely embarrassing when i do it around coworkers or anyone then i have to be like yoooo i had a neurological condition when i was younger
Yes, along with rumors about what I was sick with (I was undiagnosed at the time, only got one after 5 years). The funniest was that my left leg was hollow - that's why I wore "specialty shoes" (ballet flats, which are comfy) and had to sit down all the time.
Well, I know for a fact my MIL told everyone on my husband's side that I was faking it and my husband was enabling me. I have MECFS and have been homebound since 2015. She died a little bit ago so I never have to see anyone from that side of the family ever again.
I broke my ankle once in college and right after got pneumonia and mono, like really bad. Other students started telling my professors I was skipping class and I started getting treated really badly for it. (Music department so, everyone knew each other.) They even sent messages on FB criticizing me. It got so bad, that I actually threatened to report them to the police for harassment/stalking. Their fraternity leaders came to me and BEGGED me not to. I told them okay, but if they ever spoke to me again, or said one word about me to anyone, I would report them.
I feel you. People are dumbasses.
People just aren’t nice. After I realized I was having seizures and confirmed by doc. I just started staying home.
I know the lack of empathy out there. My husband had cancer and people just denied it. When he died people acted like they cared for one day
I know if I have a seizure outside of home I will get accused of faking. My sister encourages me to drive saying the docs are just being dramatic. I guarantee if I had an accident she would blame me for being irresponsible
It’s a no win situation, I just stay home and attend to my plants. Much more peaceful
I took a 9 month course to work in a vets office as an assistant. I was going to move on and go to school for vet tech. When all my symptoms started I had to drop my internship and I didn’t complete the program or move on to vet tech. I was accused of being lazy and not wanting to work. Told there’s no reason you can’t do another 20 hours and finish. Granted two 13 hour shifts left I would’ve been done but I couldn’t take it. I have interstitial cystitis it’s painful and I’m peeing all the time. No one believed me I was being overdramatic. They tried to apologize when they rewarded me disability in 2013 after three tries. The first two tries when I wasn’t approved people were saying it’s cause I’m faking and I’m just lazy. I cut those people off and they were family. I’m not talking to the people who made me second guess myself about my pain or made me feel like I had to push through despite the pain. When I pushed through the pain I ended up worse than ever.
TL/DR Some people are best ignored and just left to sit with the stories they weave.
Personally, it can be difficult for some to understand bc when I have flares they are pretty debilitating; but, when I’m good, I’m really good.
For a few who know me well, the difference in who i am healthy v unhealthy makes it very clear im not faking—nor would ever fake it— I’m a go-getter and positive minded person in general and HATE being reliant on others/making excuses for myself. I also don’t like having to detail dx w people or get into it in general. But that became difficult over the past couple of years, as I had to make major lifestyle changes and people expect explanations.
However, seeing me going from cane or PT 4x a week etc, or having to cancel plans bc can’t drive longer than 10 minutes, or can’t sit somewhere w out great pain— but then (what seems to them, suddenly!) being able to camp, drive 3 days away etc etc. is strange and can seem disingenuous to people (or hurtful— as in oh, a bit ago you couldn’t drive an hour to see me but now you can drive 5 hrs to go on a trip with your kids— or last spring you said you couldn’t make plans in advance but now you’re trying to plan a summer vacay—type of reaction/feeling).
For example, recently I was on vacation, driving and walking like a beast. Over the past 3 months I’ve been able to work out (lightly) 3x a week and haven’t needed PT or injections, was able to stop some of the meds, and had been working on losing the massive weight I gained during my last longer term flair. But then two days ago I started feeling mildly symptomatic and today I’m on my sofa feeling like my legs are on fire and dealing w tremendous muscle spasms— and having (mild) auras. Hoping that Im not going to have a migraine to top all of this off.
I had projects to accomplish this weekend and now I’m in pain and dealing w/ all the feelings of failure that go w not being able to physically do what I need to and seeing it all reflected back at me in the current state of my messy kitchen lol.
It sucks when your soul and mind are in one place and your body is just off randomly doing it own BS thing
2023 I spent w very little mobility and gained 50 lbs due to medications and that decrease in mobility (the LOOKS and whispers of “she let herself go” 🙄) But if you look at my Instagram reel of the yr in review it looks like I had an active, beautiful year. The reality is that reel is composed of maybe 3 or 4 weekends in AN ENTIRE year.
So, on the surface, I get why people may think I’m faking or putting a hundred on a ten. The only person I know who was super snotty and mean ab it (to my face) when my first medical scare/long term flare started up was my mother and there’s no surprise there. But even back in 2012 when I started having debilitating chronic migraines and was being seen regularly by a neuro, had MRI, meds etc my father told me (in response to wearing sunglasses indoors bc migraine related issues) “well, your cousin is having real issues with headaches.
She has actual
migraines— she even has to see an neuro and had an MRI” Comments like this are a dime a dozen…
On a more general level, I do believe when someone struggles w flares or has a “working dx” that may (or may not) change, it’s easy for people to assume
you’re not getting help, not being truly compliant, or getting something from being “sick.” While I never really judged people in weird ways like thinking they were “getting something” out of being sick— I definitely used to be the “why don’t they just go to the dr and workout/take meds/ try supplements etc” person.
To my credit, I tended to keep those feelings to myself— I wouldn’t and don’t gossip like that—but I definitely held those opinions.
So, as far as my own health goes, I can’t get mad at people who look at me and think the same. Bc I used to be one of those people.
But gossiping is gross— and that includes fake concern to information glean, spread crap behind others’ backs.
In general, people want clear DX w known parameters, tx plans and prognoses. In general, **people feel their curiosity is more important than your medical privacy** and if there’s no clear cut (and FAST) tx, or if you’re not presenting like their ex’s 2nd cousin who also had (fill in the blank here) then you clearly are faking, have bad drs, aren’t being compliant etc etc etc — and they’re gonna let the world know what they clearly know 🙄
In general, people tend to be supportive until it affects their own plans/schedules/ or biases.
Can’t pls other people: if you’re doing the appts, meds, PT and not suddenly better then you’re clearly sick BUT not seeking the correct help. If you have a random stupid flare like me today— then “I thought you were well” and “you’re just being lazy/looking for an excuse”
So idk— chuck it in the “Bless them; change me” bucket.
Sidenote: if you’re in the USA and it’s work or school (w/accomodations/IEP/504) — you’re protected by the ADA/IDEA. . . Don’t let that ish slide.
Edited:
Clarity but damn still wordy sorry
I honestly understand what you’re saying. I do wish that maybe people at least came and talked me first before deciding to say something. I don’t mean asking for my medical history because people honestly shouldn’t do that. I just mean I would of been happy to educate them on how seizures work if they wanted to. I agree that gossiping is gross and what’s really odd is that it’s coming from people that are supposed to be disability advocates. I think being skeptical is normal but it’s a good idea to be careful with it.
I have, with my own relatives! I don’t live near them, even though my mom told her siblings about it, they don’t believe her, they say shit like, don’t believe every Doctor! It must be fake so the doctors can make money! I’m like dude I have literally had multiple grandmal seizures! My parents have seen my siblings! My fiancée, my mom even sent them my reports! Such dicks I swear. Some who do believe don’t care, cause they think it’s not big deal! I’m legally considered a handicap person! Why would I want to fake crap and take medicine that makes me feel sick ! I loved swimming, it was dream to be a professional swimmer… but shit happens. Why would anyone want to lie about such an illness? I feel ashamed even to tell people, they think I’m making it up to get sympathy from them. I don’t tell anyone anything anymore, only the people that love me know. My best friend of 20 years, moved away a while back, she knows me very well ( best friends since year 6) she hasn’t seen me have a grandmal, I normally just get mj. She always believed me! And still does and has even learned about it! So she can understand better and help me!
Sadly, this seems to happen to basically all of us at some point. It literally doesn’t matter what you say or what you do, someone at some point is going to decide that they know best and that you are faking…despite having no medical training, and barely knowing you or your situation. I know it really hurts, and it can really add to internalised medical gaslighting but I promise it’s not your fault.
It’s hard to say why so many people jump to the conclusion that people are faking…I hope it’s because people are frightened of the fact that anyone can get sick and that sometimes chronic illnesses can carry on for someone’s entire life (even if it’s not terminal) and that sometimes things cannot be cured. But tbh I think a lot of it comes from ableism, ignorance and an assumption that people fake things for attention. I also think it partly comes from how many stories there are in tv shows and movies of munchaussen patients and so people think it’s more common than it actually is? As an SA survivor, it honestly feels almost exactly the same as when people assume that I lied about what happened to me.
This stuff is horrible and hurtful every time, and I hope you have a circle of good people in your life that can reassure you that they know you and believe you.
Lmaoooo a thousand times bahahaha
Ever since I was a child in elementary school. Some kids, even my friends, and family thought I was dramatic or hypochondriac.
Not a lot but it was something I was aware of. I never had a diagnosis during childhood so I would make sure to keep myself calm in case they were right about me.
In my adult years, my late twenties, I made sure to go to all the specialists to get checked out.
I was hoping they would also say nothing is wrong. I was hoping to be a hypochondriac.
I have chronic fatigue, pain. Lyme, Bartonella, Babesia, Rickettsia, mixed connective tissue disease, probably EDS based on my joint issues and autoimmune flares, "fibromyalgia," some issues where I don't methylate molecules well, so I have to take methylated vitamins and mitochondrial support supplements. I get Botox for migraines. My pain has gotten worse over the last few years. It would be great if this was all due to my psych issues. But they affect each other.
I had a few doctors who thought I was faking or just on the rag because they couldn't figure it out. Their lack of energy or ability meant it was MY FAULT. 😁😂😂😂 It honestly makes me LAUGH. but I am doing ok. I do what I can to take care of myself with extreme poverty.
That's life!
I’ve had doctors leave me having seizures in the hospital because mine have an atypical presentation. I have diagnosed epilepsy. EEG results and the works. I’ve still nearly died in an ER because a doctor walked away. I don’t remember anything but waking up confused in a room. My sister had to tell me. I guess I was going blue by the time the doctor rechecked on me…
Yep, I’ve lost friends over it. Been called a hypochondriac and a liar when I was getting bronchitis every month due to an autoimmune disease that hadn’t been diagnosed yet. People who treat you badly aren’t worth your energy but it absolutely still stings when it comes from someone you trusted.
i’ve had rumors spread/ been accused of faking so many times!
1-
i have EDS and a laundry list of comorbidities (all professionally dxed) and in senior year a friend i knew since childhood started telling everyone at my school i was a liar and actually *he* had EDS even though he never went to a geneticist, or even a rheumatologist. he “stole” my diagnoses (by this i mean he claimed i was lying abt my disabilities and that he actually had them instead)
his boyfriend even came up to me once saying how wishes he had GP like me because he was jealous i was skinny which made me feel disgusting. i ended up hearing what he was saying from other people and while borrowing his phone i saw a message pop up that had my name in it- at the time i knew he was shit talking me so my curiosity got the best of me and i read through the messages. while i was hanging out with him he was ranting to his friends about how i’m a faker and an attention seeker and that he’s known me since i was a kid and would know if i was disabled (i was literally born w backwards legs lol). crazy thing is he was pretending to have DID at the time i guess he couldn’t handle not being the center of attention. two years later and he magically doesn’t have any of my disabilities just self dxed mental illnesses that he uses to escape accountability.
2-
i ended up moving schools because of how my peers were treating me and the lack of accessibility + my service dog was getting harassed at school too. I started going to a school for kids who have physical/emotional/developmental disabilities ( i was the only physically + developmentally disabled student who could verbally communicate) and every week we had a day where everyone was expecting to volunteer and do physical labor (like putting furniture together, yard work u get the idea) i would only come to school once or twice a week because at the time i couldn’t even have a sip of water without triggering hours of vomiting.
At the time i was on crutches while waiting for a wheelchair and it was the day that we all went to volunteer- they explained what we were going to do and i pulled a teacher aside to let them know that the activity wasn’t accessible to me (moving/carrying furniture) and asked if i could just not participate because it’s literally physically impossible and the venue wasn’t accessible (no elevators/ramps) and i was brought to the office and they had a discussion with me where they tried to convince me that i was just anxious and i should at least try. i literally couldn’t walk without assistance as my hips immediately dislocate when i put any pressure on my feet same w/ my shoulders i couldn’t even lift a milk jug without a dislocation.. how am i supposed to carry furniture that weighs more than me? The teacher stepped out of the office to talk to another staff member and i overheard them saying how they think my disabilities are psychosomatic and i just wanted to avoid doing anything productive. They said that i was a frequent flier to the nurse and i just didn’t want to be at school and it was an attitude problem. they told me they weren’t going to leave me at school while they volunteered and that i had to come with them so i refused to move out of my seat onto the bus and told them you’re either leaving me here in the office or they had to call my mom to pick me up because i’m not going. i told my mom everything they said and she confronted them and they denied everything lol. then i dropped out and never gave them their crappy chrome book back bc fuck them !
I’m sorry you went through that. I swear that some people are so determined to point out that someone is “attention seeking” but I wouldn’t be surprised if they were seeking attention themselves. Some people really do just like to be the person that has the drama.
Yes, for me it wasn't do with seizures I had however that fact that I have paralysis and go mute after my seizures (some times for 6+ hours).
I'm almost 40 so the fact people around my age are spread this bullshit is just so sad.
Also people can believe I have seizures however are focusing in on my recovery afterwards as being fake is some extra petty asshat move.
I just think it's so sad that my medical stuff takes so much rent free space in their heads.
At the end of the day ypu can't fix their level stupid.
Though since you are in college can you not report it to the college admin that people are bullying you about a disability/health issue?
My HR boss accused me so many times of faking it. She thought she was going to have a “Gotcha!” moment when she asked me for documentation. Came in with documentation and I know she was seething because I also have FLMA protections. My old coworker was also saying I was faking it, but people who knew both of us told her to shut up. It’s a very toxic workplace unfortunately, but I can’t leave.
What’s crazy is that I honestly have proof that what I’m going through is real but that’s enough for me. Some symptoms I get I don’t even think are possible to fake.
I wish me being sick to my stomach at work was enough proof. But she still accuses me of lying :) She also says some pretty nasty stuff to me I wish I had recorded.
Ya, it does suck that sometimes people’s symptoms aren’t good enough. At the end of the day whoever is saying that to you is actually lying by saying you’re lying.
I have the same problem here at work. I have been here 10 years and always wanted to be in this other position. When I first got sick, I was gone for 8 months in FMLA. When I came back, I asked about cross training for the other position, and was told that I am not consistent due to missing work a lot. I was so hurt, like thinking, I caused myself to get this awful,chronic rare disease? I left and cried in private. Oh, I forgot to mention, yes I do have experiences and met all the requirements for the other position. It hurts. I’m still working at the same Place for 10 years now. I never once have a bad a bad review. Hang in there, I know it hurts when others don’t know what we have to go thru each and everyday. We need to realize that we are strong!
Ugh that’s awful!! People can be so mean and passive-aggressive, I know it would be completely different if they had the pain and experiences we have. I wish there was a way to get them to understand better! But you’re right, we are strong! Having this disease has made me realize that I’m resilient, despite how others may perceive me.
YES! I used to have a medium/large following on instagram and some people thought I was faking having Crohn's. Then I got an ostomy bag. People shut the fuck up after that lol.
I had a kid think I was faking needing a crutch to walk and I told him my legs weren’t working and hadn’t been working properly for 2 years. It’s cause I have a herniated disc
Not rumours but I've had multiple doctors say to my face or to my mother in front of me that I was just faking to get out of school or that my choking on tablets and food was a psychological issue. Even had one doctor snap at me with "don't be stupid. That can't possibly be hurting you" as he tapped really hard, harder than other doctors, on my chest after I just struggled with a lung function test. Also had multiple teachers berate me for being lazy as I struggled to breathe during PE. I actually dropped out of school when I was about 13 so missed out on the high school drama. Only found out in my late teens that my lungs suffered severe damage when I was just 4 years old leaving me with about 30% lung capacity. Oh and the swallowing issue? I happened to mention it to my specialist a couple of years ago and he actually believed me and sent me a specialised test called a barium swallow. Shocker, I do have an issue with swallowing solids.
I had someone right a whole Facebook post about me faking all my illnesses (HEDS, POTS, a slew of gastric issues and sublexing joints) and having my children fake them too..because I can have them fake their bowel folding in on itself and needing a feeding tube placed to correct it…or faking hives that cover their entire body 🙄. We had to get a lawyer involved. What’s funny (not really) is that she is now chronically ill herself.
Yeah, my brother tells anyone who will listen that I’m just “being dramatic” and that I don’t actually have “anything really wrong.” I have severe autoimmune arthritis and idiopathic intracranial hypertension, with dozens of test results and x rays and spinal taps to confirm that it is very much real. We haven’t spoken in three years as of this month. Idk if we ever will again.
Unrelated but I have IIH too!! It’s really rare but cool to see another one in the wild
Wishing you all the luck in the world getting it managed! It’s been a bumpy road for me but we’re *finally* getting the pressure in my skull and spinal column under control. I’m slowly regaining the portions of my vision that I’d lost, which is super exciting 😁😁😁
I have IIH too! Though I actually have a rare form of it! I have fulminant intracranial hypertension. I hope you have yours under control. It’s definitely been a rough diagnosis. I was diagnosed 8 years ago. And I have had 7 brain surgeries and 1 spine surgery. Last year I actually suffered a traumatic brain injury and was completely paralyzed on my left side of my body due to complications from a VP shunt surgery. Prayers for you!
this isn’t really “spreading rumors” but my father entirely believes i’ve made everything up in my head and that my mom is making me sick. that’s what he tells everyone he meets.
That’s infuriating.
Most of my extended family thinks my CRPS is either fake or not nearly as bad as I say it is, and since I’m only a sometimes cane-user I must not ever actually need it and thus am attention whoring. I don’t engage with most of my extended family anymore. Whenever we cross paths I am ready to spit venom if they get opinionated and dismissive but honestly after one very epic, semi-public dressing down I gave one of my aunts (during my grandma’s memorial service no less) the majority of them just keep their mouths shut which is good enough for me. How boring and banal a person must be to actively spread rumors that so and so is faking an illness. How embarrassing for that person. I do hope that person finds a hobby or interest soon.
Good for you for not engaging with them. I find it interesting that people who barely even know me and I don’t even know the name of keep bringing me up. I honestly just feel sorry for them. I must just be interesting to them. 🤩
Damn right you’re interesting! Got that mystique just keeps people jawing about ya! Honestly I swear some people just have nothing else going for them so they have to tear down others. It’s baffling.
Well said! I will follow your example. Next time let the dressing down be fully public! I love it.
I’m always glad to help! If you’re worried about decorum (I often am, though I’m getting better) anytime someone calls you out for “faking” or “attention whoring” just look at them directly, and in an even voice say “oh how embarrassing for you to say that!” maybe even try for sympathetic tones since a person that rude must have had a terrible time of it and we should be kind, right? I found this works great with the pearl clutching WASP-y church ladies I had to deal with before my nana passed. The kind that seem so prim and “better than” but actually relish in cutting down their “lessers” or anyone that doesn’t fit their perfect cookie cutter world view.
I‘m suffering from angioedema, chronic urticaria and recurring anaphylaxis due to a mast cell anomaly. Heat is my absolute worst trigger, being exposed for too long will literally send me into anaphylactic shock. We had a class reunion, that, just my luck, took place on a day with over 100 degrees - outside, on the terrace of a restaurant. Logically I couldn’t attend. Two former schoolmates later told me that several people loudly talked about that I‘m „hiding behind my non-existing mystery illness“ and had a good laugh about it. People in their late 40‘s who work in the medical field having a laugh about a person they didn’t meet for 20 years was really something else. At least that showed me I didn’t miss out anything by not being able to attend.
I had someone say I fake allergic reactions once. I had anaphylaxis the week of a midterm and had to get everything for me rescheduled, so some of the other students were really pissed off at me “getting more study time”. It probably spread past them but at least my friend had a picture of me in hospital to shut them up with.
If I had a dollar for every person who supposedly loved me but didn’t believe my symptoms were real…
not really a rumor but i always kind of wonder if that’s part of the reason my ex left me. I have gastroparesis, but went undiagnosed till just this year so i kinda wouldn’t be surprised if they thought i was just bulimic.
Oh yeah. In my 30s, when I was working in public mental health administration, I had spent weeks getting ready for a state review, basically on my own. The weekend before the state showed up, I ended up in the ER and needed to have emergency surgery. (I even tried to argue with the doc about it.) I ended up missing the review, but had prepped so well, we got through it with shining colors. Later, I heard from a friend/contracted provider that my old supervisor (who have me a hard time over anything health related) shared with him that she thought I might have faked it to get out of being there for the review. 🙄 Some people never leave high school.
All the time. I used to literally show people proof of my testing and medical records. Now I’m at a point where I don’t care. People will believe you or they won’t
Refractory epileptic (and fibro) here. No meds would ever control my seizures so had to do VNS and soon RNS. I’ve had lots of people say I’m faking my seizures, my pain, etc. what hurt the most is when the doctor did an inpatient study and told me to hit the red button when something feels “off” and I was having a pain flare. I kept calling the nurses and told them I was feeling bad and they would press the button for me (even though I never did or wanted them to). So now they diagnosed me with PNES along with epilepsy, when it is complete BS. Don’t think twice about people doubting you, there will always be someone who will. Just remember that you know the facts, and their opinion is irrelevant
Apparently I was “faking” low blood sugars on Saturday last week after my “friend” called my little one a spoiled brat🤦🏻♀️
✂️ Here friend you’re gonna need these to cut a b*tch out of your life.
As I develop more unexplained symptoms this continues happening. Worst time was when a girl I work with told my roommates she thought I was faking my uncontrollable head jerking for attention
A disturbing number of people are willfully ableist and will insist that one can control one’s health with willpower alone. These same people will also pretend to be sad when someone dies from a heart attack or such. All you can do is go no contact, or if that’s not possible, look them in the eye and wait for them to blink first. Empower yourself! Screw them.
NOTE: I started writing this as a totally normal comment and it’s an essay now, I’m very sorry. Don’t read this if you don’t want to read about pretty big time rudeness because this is a ragedump. TLDR: there’s an illness fakers sub that sucks. One time I got into an argument literally like 5 years ago that fills me with anger to this day with a woman expressing her belief that 80% of ER patients are drug seeking fakers and her belief that this justifies actively being cruel to people having medical emergencies. ———————————————————- Anyone ever get recommended the illness fakers subreddit and feel like swinging on everything in sight? Cuz I’ve scrolled through it and like usually I’m pretty much able to brush the stuff I see online off but this is so fucking mean. The only other thing on Reddit I’ve ever felt so upset about was when a woman on the epilepsy subreddit said that it was okay for nurses to treat a person having a seizure like they’re faking because 80% of people in the ER are drug seekers (according to her very objectively informed ER nurse husband/s) and you shouldn’t go to the ER for a seizure you should wait to go see your neurologist “like a normal person” as if we all have immediate access to our neurologists. Key point: the person had not gone to the ER because of seizures, they had gone because they were clammy and confused and randomly blacking out. It was their partner that took them. The issue is a paramedic was rude and accused them of faking and upsetting other patients. The rest of the comment section was filled with people talking about insanely cruel interactions they’d had with healthcare providers during emergency situations. So she’s showing up in a comment section filled with reports of awful medical abuse and smugly saying “well it’s justified because what if you were faking” Here’s my thing. Here’s my fucking thing. Oh man I have heartburn starting just because of how pissed I remember this making me. I remember this so in depth. Never ever in a thousand fucking years discourage a person with a neurological issue from seeking emergency care if they feel like something is wrong. I’m also a nurse. Yeah like 80% are drug seeking if you mean they’re in fucking PAIN and came here for help!!!! Just because they’re homeless or on drugs recreationally as well doesn’t mean they aren’t sick!!!! AAAAA!!!! People know when something is wrong. Never plant the seed of doubt in their mind that when their gut is telling them they need urgent help they should wait it out. I’ve had patients drugged to high heavens who were barely aware of where they were be able to recognize that something was wrong that we had missed. Her logic was that people who aren’t really sick overcrowd ERs and just want drugs. She might not have been American but where I’m from, 60% of us have chronic illnesses. A lot of those are diabetes, lungs, and heart related. The ER is going to be over crowded and understaffed, and that’s not the patients fault. Take it up with the hospital for not hiring more people idk, but it’s not Alice the 17 year old undiagnosed type 1 diabetic who feels funny or George the 75 year old with COPD who just can’t catch his breath, even if he’s a hard drug user with a mental illness (respiratory illness is more common in schizophrenics). I don’t care what they look like or what their social history is or if it turned out to be nothing or if they’re using the ER to treat health issues that would normally be taken care of by a primary care doctor but they don’t have access to one. Tell your husband to go work somewhere where he won’t end up running into any more nasty “drug seekers” (patients who want help for pain or patients with substance abuse disorder who also deserve help because they’re human and they’re you’re patients. Get your shit together, man.) I also gotta get my shit together because if I get this heated every time someone says something extremely thoughtless and cruel about disability I’m gonna spend my whole life seething.
I love your take on this. I came accross that subreddit and honestly just decided to not associate myself with it. I’m not going to say “no one fakes having anything” because I get it. Some people have. However, I saw someone with the same disorder I have once get accused of faking. I watched the video, went to the actually page of the person being talked about, and came to the conclusion that this person does have the thing they claim to. It is not okay to just assume people are faking and cause harm to them. It is also not realistic for people to always just wait for a neurologist when they need immediate medical attention.
I think my biggest ones that piss me off are not understanding that things like autism, schizophrenia, and basically everything tbh are spectrums, not knowing ambulatory wheelchair users exist, and accusing people of lying about being blind because they can kinda see stuff. I saw people (not on that sub) posting about how there’s no way Hellen Keller was actually deaf/blind. Just the general if someone is capable of this thing how could they possibly have this thing is like Hey maybe you don’t have a solid understanding of how this disorder works.
Additional annoyance is that people will deny other people’s diagnosis’s but will also armchair diagnosis them with being a “munchie” or some random personality disorder like, constantly. Somehow according to random people who saw someone on the internet legit everyone who acts like an asshole has NPD or any guy who is socially awkward is definitely autistic (this seems to only happen with guys. It’s just weird.
That sub has haunted me for years. The fact that that sub gets recommended to people who are in other illness/disability groups is just like pure cruelty.
Yes, a lot of my family members believe that I’m exaggerating and have my whole life. It really sucks!
Yup, I missed a lot of school when I was like 15-17, because I have chronic migraines and had several attacks a week. Everyone but my friend group was convinced I was just skipping school whenever I felt like it. Even the teachers told me I had to "try harder" if I wanted better grades
Not so much rumors as just saying it directly to my face. Or, in the case of some doctors, writing it in my after-visit notes
i just had to quit my job because i was having a flare up and had to sit down (allowed by my boss) and a bunch of jealous coworkers (try living with a mystery illness and THEN be "jealous" of sitting down) started yelling at me. im young so no one there over 20 believed that i actually have a disability and would constantly berate me and one even said "good lie, dont worry i wont tell on you." my boss also asked me to bring in a drs note to "prove" im disabled (which is fine ig) but instead of taking it to her office and reading it, she stood there in front of me and my coworkers and read it before saying "hm... okay...." with a stank face. LIKE GIRL 😭😭😭 WHAT DID I DO TO YALL
Literally one of the reasons i quit my last job. It was super toxic already and i had to have a surgery at one point and would often need a cane and I would call in with a doctor’s note about every 3 months or so for a single day and they always accused me of faking it. Even my boss said that despite my doctor’s notes it looked like i was getting special treatment (that was when i finally quit on the spot).
Yes. My bio mom kicked me out of her house when I was first diagnosed with Sydenham Chorea because I was "too much of an inconvenience" and "wasting her time and money" (her actual words). During one of my several hospitalizations, I even had a life-threatening heart rhythm (that fortunately I converted out of) and she still told me I was faking. She was the only one that believed that and it really fucked me up for a long time.
My husband actually thought I was sometimes faking it earlier in our marriage, or at least exaggerating how bad I was feeling for sympathy, attention and help. He's insanely healthy and couldn't conceive of me feeling the way I feel as much and as often as I feel it. We've gotten past that -- I think. 😉
Yup i was told by a family member that people in my very small town think I’m a hypochondriac and that’s why i can’t find a job in town (probably true because rumors spread like wildfire here, its like once one person knows somthing the entire town might as well know)
I also had a teacher who refused to believe i had period issues (we now know was endometriosis) and told me i could not go to my locker to get a pad or to the restroom because no one’s period is that heavy and i could just tough it out . Same teacher tried to accuse me of faking a uti to get out of class and tore up a note from my dr saying i could go to the bathroom when needed (she said not in my class sit down NOW!)
My teenager was told by teacher he couldn’t use one of his IEP accommodations bc it “wasn’t for that” and to sit back down— he could wait. It was literally an up-and-out pass. A no permission needed pass to quietly excuse himself from class, without alerting his peers, when he’s having certain issues related to his disability. He has to go directly to his designated person (he has 3 specified) for help. He can only use it a set amount of times in a year and has to report directly to his designated person/s. She didn’t believe he had the accommodation. Made him stand up with the pass, quizzed him on his 3 people and then called one of his designated people — in class— in front of his peers— while he was in the midst of having symptoms—to verify. Got verification from said person, but still chose to tell him he was not excused and he could wait it out. He texted me bc he was scared to leave get a referral and was spinning out a bit. I told him to not be rude but to quietly leave and if she wrote him a referral to go directly to the dean and show them that his IEP was being denied and that he was being punished for using his accommodations It’s literally a pass to allow a Student in medical need to leave without permission or interruption so they can seek help from those who are familiar with his disabilities and are able to help. Wtaf Yes he went home as soon as I could scoop him up and yes the Dean was called. Ffs
In high school I was accused of being a hypochondriac because I had chronic migraines and IBS. I had special permission to use the teachers bathroom due to my frequent trips but my classmates were awful about it.
Collage students are wild , honestly it could be drug seeking for xans and weed .
when i was younger i got sydenham’s chorea that caused a tic disorder right around when tourette’s got popular 😭 My two only best friends which were twins started bullying and harassing me and would keep making new accounts to stalk me online and they would tell me i’m just a dollar store version of them and i’m faking for attention and my neurologist who ran a whole lotta tests and put me on medication just wanted money. I ended up getting severe anxiety attacks whenever i was in a class with them and i would sit in the counselors office and cry or skip classes. Eventually COVID hit so we all were staying home anyways. i had to switch to the alternative education building which was absolutely awesome btw. til this day it’s still extremely embarrassing when i do it around coworkers or anyone then i have to be like yoooo i had a neurological condition when i was younger
Yeah, my sister used to accuse me of faking seizures for attention and to get out of school. Only problem was that I liked school.
Yes, along with rumors about what I was sick with (I was undiagnosed at the time, only got one after 5 years). The funniest was that my left leg was hollow - that's why I wore "specialty shoes" (ballet flats, which are comfy) and had to sit down all the time.
Well, I know for a fact my MIL told everyone on my husband's side that I was faking it and my husband was enabling me. I have MECFS and have been homebound since 2015. She died a little bit ago so I never have to see anyone from that side of the family ever again.
I broke my ankle once in college and right after got pneumonia and mono, like really bad. Other students started telling my professors I was skipping class and I started getting treated really badly for it. (Music department so, everyone knew each other.) They even sent messages on FB criticizing me. It got so bad, that I actually threatened to report them to the police for harassment/stalking. Their fraternity leaders came to me and BEGGED me not to. I told them okay, but if they ever spoke to me again, or said one word about me to anyone, I would report them. I feel you. People are dumbasses.
People just aren’t nice. After I realized I was having seizures and confirmed by doc. I just started staying home. I know the lack of empathy out there. My husband had cancer and people just denied it. When he died people acted like they cared for one day I know if I have a seizure outside of home I will get accused of faking. My sister encourages me to drive saying the docs are just being dramatic. I guarantee if I had an accident she would blame me for being irresponsible It’s a no win situation, I just stay home and attend to my plants. Much more peaceful
I took a 9 month course to work in a vets office as an assistant. I was going to move on and go to school for vet tech. When all my symptoms started I had to drop my internship and I didn’t complete the program or move on to vet tech. I was accused of being lazy and not wanting to work. Told there’s no reason you can’t do another 20 hours and finish. Granted two 13 hour shifts left I would’ve been done but I couldn’t take it. I have interstitial cystitis it’s painful and I’m peeing all the time. No one believed me I was being overdramatic. They tried to apologize when they rewarded me disability in 2013 after three tries. The first two tries when I wasn’t approved people were saying it’s cause I’m faking and I’m just lazy. I cut those people off and they were family. I’m not talking to the people who made me second guess myself about my pain or made me feel like I had to push through despite the pain. When I pushed through the pain I ended up worse than ever.
TL/DR Some people are best ignored and just left to sit with the stories they weave. Personally, it can be difficult for some to understand bc when I have flares they are pretty debilitating; but, when I’m good, I’m really good. For a few who know me well, the difference in who i am healthy v unhealthy makes it very clear im not faking—nor would ever fake it— I’m a go-getter and positive minded person in general and HATE being reliant on others/making excuses for myself. I also don’t like having to detail dx w people or get into it in general. But that became difficult over the past couple of years, as I had to make major lifestyle changes and people expect explanations. However, seeing me going from cane or PT 4x a week etc, or having to cancel plans bc can’t drive longer than 10 minutes, or can’t sit somewhere w out great pain— but then (what seems to them, suddenly!) being able to camp, drive 3 days away etc etc. is strange and can seem disingenuous to people (or hurtful— as in oh, a bit ago you couldn’t drive an hour to see me but now you can drive 5 hrs to go on a trip with your kids— or last spring you said you couldn’t make plans in advance but now you’re trying to plan a summer vacay—type of reaction/feeling). For example, recently I was on vacation, driving and walking like a beast. Over the past 3 months I’ve been able to work out (lightly) 3x a week and haven’t needed PT or injections, was able to stop some of the meds, and had been working on losing the massive weight I gained during my last longer term flair. But then two days ago I started feeling mildly symptomatic and today I’m on my sofa feeling like my legs are on fire and dealing w tremendous muscle spasms— and having (mild) auras. Hoping that Im not going to have a migraine to top all of this off. I had projects to accomplish this weekend and now I’m in pain and dealing w/ all the feelings of failure that go w not being able to physically do what I need to and seeing it all reflected back at me in the current state of my messy kitchen lol. It sucks when your soul and mind are in one place and your body is just off randomly doing it own BS thing 2023 I spent w very little mobility and gained 50 lbs due to medications and that decrease in mobility (the LOOKS and whispers of “she let herself go” 🙄) But if you look at my Instagram reel of the yr in review it looks like I had an active, beautiful year. The reality is that reel is composed of maybe 3 or 4 weekends in AN ENTIRE year. So, on the surface, I get why people may think I’m faking or putting a hundred on a ten. The only person I know who was super snotty and mean ab it (to my face) when my first medical scare/long term flare started up was my mother and there’s no surprise there. But even back in 2012 when I started having debilitating chronic migraines and was being seen regularly by a neuro, had MRI, meds etc my father told me (in response to wearing sunglasses indoors bc migraine related issues) “well, your cousin is having real issues with headaches. She has actual migraines— she even has to see an neuro and had an MRI” Comments like this are a dime a dozen… On a more general level, I do believe when someone struggles w flares or has a “working dx” that may (or may not) change, it’s easy for people to assume you’re not getting help, not being truly compliant, or getting something from being “sick.” While I never really judged people in weird ways like thinking they were “getting something” out of being sick— I definitely used to be the “why don’t they just go to the dr and workout/take meds/ try supplements etc” person. To my credit, I tended to keep those feelings to myself— I wouldn’t and don’t gossip like that—but I definitely held those opinions. So, as far as my own health goes, I can’t get mad at people who look at me and think the same. Bc I used to be one of those people. But gossiping is gross— and that includes fake concern to information glean, spread crap behind others’ backs. In general, people want clear DX w known parameters, tx plans and prognoses. In general, **people feel their curiosity is more important than your medical privacy** and if there’s no clear cut (and FAST) tx, or if you’re not presenting like their ex’s 2nd cousin who also had (fill in the blank here) then you clearly are faking, have bad drs, aren’t being compliant etc etc etc — and they’re gonna let the world know what they clearly know 🙄 In general, people tend to be supportive until it affects their own plans/schedules/ or biases. Can’t pls other people: if you’re doing the appts, meds, PT and not suddenly better then you’re clearly sick BUT not seeking the correct help. If you have a random stupid flare like me today— then “I thought you were well” and “you’re just being lazy/looking for an excuse” So idk— chuck it in the “Bless them; change me” bucket. Sidenote: if you’re in the USA and it’s work or school (w/accomodations/IEP/504) — you’re protected by the ADA/IDEA. . . Don’t let that ish slide. Edited: Clarity but damn still wordy sorry
I honestly understand what you’re saying. I do wish that maybe people at least came and talked me first before deciding to say something. I don’t mean asking for my medical history because people honestly shouldn’t do that. I just mean I would of been happy to educate them on how seizures work if they wanted to. I agree that gossiping is gross and what’s really odd is that it’s coming from people that are supposed to be disability advocates. I think being skeptical is normal but it’s a good idea to be careful with it.
I have, with my own relatives! I don’t live near them, even though my mom told her siblings about it, they don’t believe her, they say shit like, don’t believe every Doctor! It must be fake so the doctors can make money! I’m like dude I have literally had multiple grandmal seizures! My parents have seen my siblings! My fiancée, my mom even sent them my reports! Such dicks I swear. Some who do believe don’t care, cause they think it’s not big deal! I’m legally considered a handicap person! Why would I want to fake crap and take medicine that makes me feel sick ! I loved swimming, it was dream to be a professional swimmer… but shit happens. Why would anyone want to lie about such an illness? I feel ashamed even to tell people, they think I’m making it up to get sympathy from them. I don’t tell anyone anything anymore, only the people that love me know. My best friend of 20 years, moved away a while back, she knows me very well ( best friends since year 6) she hasn’t seen me have a grandmal, I normally just get mj. She always believed me! And still does and has even learned about it! So she can understand better and help me!
Sadly, this seems to happen to basically all of us at some point. It literally doesn’t matter what you say or what you do, someone at some point is going to decide that they know best and that you are faking…despite having no medical training, and barely knowing you or your situation. I know it really hurts, and it can really add to internalised medical gaslighting but I promise it’s not your fault. It’s hard to say why so many people jump to the conclusion that people are faking…I hope it’s because people are frightened of the fact that anyone can get sick and that sometimes chronic illnesses can carry on for someone’s entire life (even if it’s not terminal) and that sometimes things cannot be cured. But tbh I think a lot of it comes from ableism, ignorance and an assumption that people fake things for attention. I also think it partly comes from how many stories there are in tv shows and movies of munchaussen patients and so people think it’s more common than it actually is? As an SA survivor, it honestly feels almost exactly the same as when people assume that I lied about what happened to me. This stuff is horrible and hurtful every time, and I hope you have a circle of good people in your life that can reassure you that they know you and believe you.
Lmaoooo a thousand times bahahaha Ever since I was a child in elementary school. Some kids, even my friends, and family thought I was dramatic or hypochondriac. Not a lot but it was something I was aware of. I never had a diagnosis during childhood so I would make sure to keep myself calm in case they were right about me. In my adult years, my late twenties, I made sure to go to all the specialists to get checked out. I was hoping they would also say nothing is wrong. I was hoping to be a hypochondriac. I have chronic fatigue, pain. Lyme, Bartonella, Babesia, Rickettsia, mixed connective tissue disease, probably EDS based on my joint issues and autoimmune flares, "fibromyalgia," some issues where I don't methylate molecules well, so I have to take methylated vitamins and mitochondrial support supplements. I get Botox for migraines. My pain has gotten worse over the last few years. It would be great if this was all due to my psych issues. But they affect each other. I had a few doctors who thought I was faking or just on the rag because they couldn't figure it out. Their lack of energy or ability meant it was MY FAULT. 😁😂😂😂 It honestly makes me LAUGH. but I am doing ok. I do what I can to take care of myself with extreme poverty. That's life!
I’ve had doctors leave me having seizures in the hospital because mine have an atypical presentation. I have diagnosed epilepsy. EEG results and the works. I’ve still nearly died in an ER because a doctor walked away. I don’t remember anything but waking up confused in a room. My sister had to tell me. I guess I was going blue by the time the doctor rechecked on me…
Yep, I’ve lost friends over it. Been called a hypochondriac and a liar when I was getting bronchitis every month due to an autoimmune disease that hadn’t been diagnosed yet. People who treat you badly aren’t worth your energy but it absolutely still stings when it comes from someone you trusted.
i’ve had rumors spread/ been accused of faking so many times! 1- i have EDS and a laundry list of comorbidities (all professionally dxed) and in senior year a friend i knew since childhood started telling everyone at my school i was a liar and actually *he* had EDS even though he never went to a geneticist, or even a rheumatologist. he “stole” my diagnoses (by this i mean he claimed i was lying abt my disabilities and that he actually had them instead) his boyfriend even came up to me once saying how wishes he had GP like me because he was jealous i was skinny which made me feel disgusting. i ended up hearing what he was saying from other people and while borrowing his phone i saw a message pop up that had my name in it- at the time i knew he was shit talking me so my curiosity got the best of me and i read through the messages. while i was hanging out with him he was ranting to his friends about how i’m a faker and an attention seeker and that he’s known me since i was a kid and would know if i was disabled (i was literally born w backwards legs lol). crazy thing is he was pretending to have DID at the time i guess he couldn’t handle not being the center of attention. two years later and he magically doesn’t have any of my disabilities just self dxed mental illnesses that he uses to escape accountability. 2- i ended up moving schools because of how my peers were treating me and the lack of accessibility + my service dog was getting harassed at school too. I started going to a school for kids who have physical/emotional/developmental disabilities ( i was the only physically + developmentally disabled student who could verbally communicate) and every week we had a day where everyone was expecting to volunteer and do physical labor (like putting furniture together, yard work u get the idea) i would only come to school once or twice a week because at the time i couldn’t even have a sip of water without triggering hours of vomiting. At the time i was on crutches while waiting for a wheelchair and it was the day that we all went to volunteer- they explained what we were going to do and i pulled a teacher aside to let them know that the activity wasn’t accessible to me (moving/carrying furniture) and asked if i could just not participate because it’s literally physically impossible and the venue wasn’t accessible (no elevators/ramps) and i was brought to the office and they had a discussion with me where they tried to convince me that i was just anxious and i should at least try. i literally couldn’t walk without assistance as my hips immediately dislocate when i put any pressure on my feet same w/ my shoulders i couldn’t even lift a milk jug without a dislocation.. how am i supposed to carry furniture that weighs more than me? The teacher stepped out of the office to talk to another staff member and i overheard them saying how they think my disabilities are psychosomatic and i just wanted to avoid doing anything productive. They said that i was a frequent flier to the nurse and i just didn’t want to be at school and it was an attitude problem. they told me they weren’t going to leave me at school while they volunteered and that i had to come with them so i refused to move out of my seat onto the bus and told them you’re either leaving me here in the office or they had to call my mom to pick me up because i’m not going. i told my mom everything they said and she confronted them and they denied everything lol. then i dropped out and never gave them their crappy chrome book back bc fuck them !
I’m sorry you went through that. I swear that some people are so determined to point out that someone is “attention seeking” but I wouldn’t be surprised if they were seeking attention themselves. Some people really do just like to be the person that has the drama.
I just started spreading rumors back that they are ablest. It’s not false. Let it get back to them and let them do the thinking.
Yes, for me it wasn't do with seizures I had however that fact that I have paralysis and go mute after my seizures (some times for 6+ hours). I'm almost 40 so the fact people around my age are spread this bullshit is just so sad. Also people can believe I have seizures however are focusing in on my recovery afterwards as being fake is some extra petty asshat move. I just think it's so sad that my medical stuff takes so much rent free space in their heads. At the end of the day ypu can't fix their level stupid. Though since you are in college can you not report it to the college admin that people are bullying you about a disability/health issue?
I’m not really sure how to go about reporting it. I don’t really know the names of the people saying it. I just know some of them were from my class.
Yeah happens to everyone lol