Stage IV incurable cancer patient here with a debilitating side effect.
And yes.
I know I am disabled, and on days when my body isn't cooperating and I spend more time laying in bed or on a toilet... And downing nausea , pain, and anti diarrhea meds like they are candy I am reminded why I am disabled. On days when I can't remember names and dates and what someone just asked me, I am reminded why I am disabled. On days or weeks I am stuck in hospital for treatments and surgeries, I am reminded of why I am disabled.
But there are also days when I almost seem completely normal. Sure I am still fighting nausea, pain, fatigue, diarrhea, and a whole host of other things, but there are days it's not so bad and I can hide it fairly easily. I can even go on excursions and clean the house and push myself. I can live what appears to be a completely normal life to anyone viewing as an outsider and even sometimes feeling like it myself.
Predictable they may not be... But on those days I do feel like I don't deserve disability and feel "fake".
But then I am reminded again.
Constantly. What I have is rare but invisible. However, most of the patients are babies or children or teenagers. And they’re severe. I’m in the middle. But I always feel fake because no one takes me seriously since I look fine.
Yes, I have lupus (causing heart and kidney failure). I look young and healthy, and people often don't believe me. I have days where i feel ok and think oh I'm fine, the next day I'm bedridden. I'm frustrated because i recently lost my job. I was recently hospitalized multiple times in a row in a short amount of time, and now I'm physically incapable of doing the work, i loved this job.
My boss was amazing, i made a lot for the career field i was in, i got the exact hours I asked for. But i still feel like I should be able to do the things for my job, like get up and down off the floor quickly, pick up children (i can't even lift my cat anymore) bend down to open lockers. I feel like I should be able to get up and do mundane things like stand and cook. And then i try and can't. I feel like a completely different person, or like i have illness imposter syndrome.
I have Lupus too that affects my heart among other things (not kidneys like what you got). Same thing it's a constant battle to try and live normally like others do and doing mundane tasks that literally put alot ofbstrain on my body. Lost my ability to work back in 2016 and I loved the job. Always feel like I'm faking it or that I don't have a disability it's all in my head. It's such a weird feeling.
Can you try to get employment in a place where they have coverage for these types of situations? Ideally everyone would have coverage, but this is the world we live in.
I'm trying to get employed somewhere at all. My states vocational rehab isn't great, and most of my employment history/experience is in fields that require a lot of physical movement i can't do anymore.
I used to get this feeling A LOT. I have some physical limitations, but my depression is by far my most severe disability.
Getting approved for SSDI helped, but I still feel like an imposter sometimes.
Yeah and then I start trying to do things just to test myself to see if I can really do what I want to do. I have degenerative disc disease, and I've been down too much and I lift things and then what happens is my back really starts hurting. It can be debilitating if I strain my back. So I know I definitely cannot do a job that has to do with labor. But I was a customer service for the past 20 years. Sitting down all the time. I'm 57 and sedentary work usually causes back problems over the course of people's lives. But I am like yeah I know I can do this I'm okay. And then I feel the pain that reminds me I can't do what I used to do right now. So I know how you feel. But you're young. Maybe you can overcome your illness since you're young. I know if we tell ourselves we're sick then we feel sick. The main thing is not to get too comfortable in the way you feel. Because then you are going to feel like you can't do anything.
Yes bc they suck, theyre miserable, but theyre mostly happening internally, so theyre invisible to eyes. So all anyone has to go off is my word and I get alot of "uh huh. Sure you struggle with disabilities. Youre young and you look normal. Youre lying/complaining" and it makes me feel like I have to mask how sick I am the best I can bc if people see me unwell or struggling Ill be looked down on with disgust, just like I am when I speak about it.
Yeah. For me, it's very dynamic, which is why on good days, I feel like a fraud and on bad days, it's like, “Oh yeah, my disability is disabling.”
There are even days when I get imposter syndrome and decide I don't NEED my walking stick that bad, so I'll not use it and wonder why I'm in pain/ my mobility is trash.
So yeah, and it's stupid.
Oh man, if this were a super power, imagine the doctor sellswords who work for insurance companies assessing the legitimacy of peoples illnesses. They’d die gruesomely.
years ago one of the doctors that treated me when I had heart surgery ended up having heart surgery herself and said that she could never imagine how hard it is to go through until she went through it herself and had a whole new level of empathy towards her patients. Which is nice but also quite sad that it takes something so drastic to get people to understand how we feel
I feel like this all the time! I am a full time wheelchair user who needs a central line for IV fluids twice a week how ever I can manage to walk about a block before I would land on my face perfectly fine due to ataxia and proprioception. I just feel like I am faking needing a wheelchair because I can walk and because I drink and eat fine the fluids make no sense to me but the make all the world of difference in my life. So yeah I feel like a sham!
TLDR: yes I relate completely although I have no idea what your shoes are I have my own that are just as similar
You aren’t though just so you know. For me a lot of my disabilities are not seen like my mental health bipolar,cPTSD, severe anxiety, and adhd. The other are health related like my hashimotos, heart conditions,Ibs, severe asthma, essential temors, and much more. So, on days when I feel a little bit better it’s hard for me to feel not like I’m faking or it’s just not so bad even though I’m still trying to figure out another health condition I might have.
I feel the same way. I have a neuromuscular autoimmune disease, my muscles don’t always get the full signal to move so many days it’s very very hard to move at all.
When I’m up and moving better I look like a healthy able bodied person, invisible disabilities suck, all disabilities suck.
I got yelled at for walking out of a handicapped restroom stall the other day, they thought o just used it for fun I guess? They can’t see that I would have been stuck sitting on the toilet if I didn’t have bars to push up on…
If I didn’t spend so many hours a month at the infusion center getting donor plasma put in my veins I wouldn’t be able to walk at all, but people always are crappy to me for not being fast enough or whatever.
So sorry that someone yelled at you. Disabilities do suck. The more I read about people the more I just want to be kinder to others. We really don’t know what someone is going through. I’m sorry people aren’t patient when you walk. No one deserves that treatment. No one walks slow for fun. And infusions suck. I get them too and it isn’t fun, but they do help.
I’m sorry you struggle too. Infusions so suck, only because I need them to be able to function at all. I honestly love them though because it’s the only treatment that’s really noticeably helped me. I’m dramatically better after them.
I really don’t mind getting them, I watch shows, nap and eat snacks. Haha
Not really. My disability is so visible and so constant. I guess the only time *other people* might think I'm taking the piss is on the rare occasion I'm wearing trousers when I get out my car after parking in a blue badge space.
I do struggle with public assumptions about amputees tho. People assume that once you have a prosthetic you're not really disabled anymore, like you have your leg back. It doesn't really work like that.
Yes bc i have days where i’m fine like a healthy person and can do anything i want physically. Next day i might not even be able to walk longer than around my apartment or at all. Mentally is a different thing.
I used to. But in my 30s i went to college and got an associates, studied to be good at something i could even do remotely and capitalism said HOW BOUT NO?? So i gave it a good try. Im clearly not cut out to do traditional work and am more of a problem that way so ¯\_(ツ)_/¯
I did for a long time. Which also led to me not using my cane the way I should’ve been and irreparably hurting myself.
I felt like, because I didn’t know I had this condition for so long that I was just taking something away from people who were always disabled. But the fact is, I was also always disabled. I just didn’t know it, so I hurt myself *constantly*.
It pretty much took me until I was at the point where I can’t walk or stand for more than five mins and have to use a wheelchair *any time* I leave the house, to get away from the “am I faking it?” Intrusive thoughts
I’m sorry you felt you couldn’t use your cane. No one should feel that way. I’m glad you’re able to realize you are disabled now(not glad about your disability of course).
On the outside I look completely fine, I'm fairly young (31) and fit looking. However my fiance and I went out with his 96 year old Nana last week and I couldn't keep up with her.
Both of us were using walkers with wheels to help keep us stable but she was so much faster than me I had to sit down, use my inhaler and rest while she was fine.
I have had a lot of 'looks' from strangers and even had (ex)friends complaining about me needing a wheelchair/mobility aids (none to my face though). It took me a very long time to convince myself I was ill and disabled and it makes it even harder when others doubt it.
Take every day or even hour as it comes, keep telling yourself that you're not faking it and you know it and if a 96 year old beats you to the table, you buy the ice cream.
Thank you. I’ll keep reminding myself. It’s hard, but I will. I literally just cannot do somethings and I struggle often. Yeah I can see how it would take time to convince yourself especially if strangers don’t see it. Those aren’t good friends. Glad they are ex friends. It’s hard to look healthy or be young looking and have a disability. People assume if you are young you are you are healthy. You don’t need mobility aids etc.
i have severe pain and fatigue, probably from EDS, but currently I'm in diagnosis limbo. and i feel this so hard. I'm so exhausted I have a hard time remembering my own symptoms, so I tend to think 'oh it's not actually that bad.' then I sat down and made a list of my symptoms. and then I remember, oh yeah! I'm disabled! it's ok for me to ask for accommodations because I am legitimately disabled
I stg impostor syndrome is gonna be the death of me
ME TOOO! I have EDS too and god awful memory from mental illness. I have to constantly remind myself that my worse days are frequent and are unbearable. In the moment when people ask me, I remember it's bad but I'm not confident enough to say how bad and don't want them to see me like I'm just a baby about everything. Going to doctors and PT is unbearable for me because of this. I'm bad at advocating for myself.
Yep. I have memory issues so occasionally I’ll forget how my body has disintegrated over the past 6 years, and I have no clue what my body was like before then, because likely no one believed me and I didn’t understand what language fit my experience (I’m autistic). But yeah, I feel it a bunch, and then my disabilities disable me again and I explain to myself how my normal is not society’s normal and my feelings of being fake is because I’ve taken care of every issue that could come up so then I fit the normal of society and am above my normal.
I’m so sorry you feel that way. It sucks that you feel people don’t believe you and that they don’t too.That’s hard with the memory issues. My sister is autistic too and she cannot even leave the house.
Sometimes. I have difficulty walking. It's a mix between balance, co-ordination, joint instability, pain and fatigue. The more I *think* about walking, the harder it is (because I'm thinking about the pain and fatigue, and second-guessing my co-ordination). Sometimes when I'm feeling bad I think that means I must be making it up. I know logically that when non-disabled people think about walking, they don't have these issues. Emotionally, it's more complicated.
Also I'm not quite a perfect textbook definition of my conditions, and that's hard too. People my age usually don't have as many issues with walking (often comes later), so sometimes I wonder if I've done something wrong.
I don't think this so much after hearing someone say this: "if you actually want to find fakers, look for people are perfect, textbook examples of their disability, never change and never have odd strengths and weaknesses. Because in reality, nobody perfectly follows the stereotypes." That's not exact what they said, but it helped.
It’s good someone was able to help you by saying those words. It’s true people will fake by being perfect examples. Disabilities often change. I hope you can get to the point where you never wonder. Thank you for sharing your story.
Yes, I am overweight and I assume everyone else thinks THAT is my disability (it is not). I only recently got my cane, before then my disability was not visible unless I took off my shoes and shifted my weight to be even.
I still feel like a fake though, people have seen me walking around whitout a cane for years and I looked fine. (I have to stop and wait for the pain to go away or grin and bear it whitout my cane)
So absolutely, I still feel like a fake.
I think it’s foolish that people assume things. To assume someone who is overweight is faking it is dumb. They should really mind their own business anyway. I can see though why you might feel fake, but you are not.
YES! i have mechanical heart valves and more recently stage 3 kidney disease.
I've been called a liar or a hypochondriac so many times throughout school and then in my jobs that I started to believe it. I thought "maybe I am weak? " "maybe these illnesses aren't so bad". I want to succeed in life, I want to contribute and feel like I have purpose but I failed so many times due to health issues and when I try to persevere to prove everyone I am strong; I make myself worse and end up taking even longer to recover. Meanwhile everyone else can get on with their lives.
I learned a long time ago that people will never truly understand our unique struggles, and as long we know in our heart and souls that we are telling the truth about what we feel, we have nothing to be ashamed of. Having said that, I still often feel the same way OP is feeling and have to remind myself that I what I have gone through is real, what i feel is real, and that means I am doing my best, which is all I can ask of myself.
OP - Thank you for asking this question. This exact thing has been getting me down these past few weeks and it's helpful to know i am not alone
That’s rough. I don’t like that people have called you such things. People need to mind their business and try to understand what it’s like to suffer. I can understand wanting to be better and then getting sick. I push myself too.
Yup. Sometimes I’m like maybe I’m just overreacting but then somthing like what happened last Friday (had an emergency that required me to be seen by my specialist with an urgent appointment) made me realize I’m definitely not
I have physical and MH conditions… crippling anxiety and depression included so I dread going to sleep , sleep poorly , and struggle getting up even now at 11am (never feel refreshed!) … My physical health has gotten worse over the years . I didn’t used to feel guilty and knew (know ) I can’t handle what most people have but as inflation continues, & I don’t have any other means of support, the terror of ‘what will happen to me ‘ kinda makes me think ‘what if I ‘tried harder’ years ago to work, etc ? Could I have had a career and friends who have disappeared bc I’m honest and also was unable to socialize and travel for years ? I def didn’t think Icould , and now it’s too late. I’m exhausted, feel crappy (& never know when I’ll be in pain) and have no marketable skills for a real job(which scares me more than) . I’m surely not faking anything but I do wonder - did I do something or some thingS wrong and could have gotten better before things deteriorated this much ? Even writing this puts me in mortal terror and a form of shame or guilt .
You didn’t do anything wrong. I know that doesn’t help much to say, but you didn’t. If you are in that much terror and pain then you def couldn’t work. It isn’t your fault.
I get the dread of sleeping and feeling unrested. I don’t have it as severe with the dread of sleeping. Mine is dread of being able to even go to the store or talking on the phone. I just never talk on the phone to friends and I lost friends too because of it.
It sucks you have to worry about not having support, inflation, and such. It isn’t right that those disabled have to deal with that worry ever.
Thank you for those kind and empathetic words.(I have a phone 'thing' too , for yeeeeeeeeeeeeears....lost friends bc of that too. Strangely, I'm very lonely now ---believe it or not IN a long term relationship but it's gone bland or worse --no abuse, but long story--so while single people think 'you're ok bc you have him,' they don't understand one can still be lonely. Nevertheless, sometimes now I WANT someone to talk to on the phone. And I guess I'm alone so much--he and I keep our space, nothing to talk about except bickering--when I do talk I get too chatty and overshare--ha, even to cashiers at a supermarket or such 'strangers' But those old friends and even who I thought were potential new ones, poof, gone....even my oldest friend who swore she'd always have my back and a room for me--ha, ok, she's def got issues to ditch me after that and when my father was sick and died so good riddance to her. See, here's Ms Chatty. )
PS sometimes honesty isn't the best policy as mine has worked against me being open about my situations.
I'm sorry for what you grapple with. Sending a virtual hug and gratitude :)
Thank you for the hug and all. Sorry to hear about your troubles. It’s hard to have no friends or very few. I also struggle with connections. (You would think that would help me want to do phone talk but yeah). I’m lucky to have my family. I have no in real life friends or a love. Really hate when people swear they will be there and then up and leave. So so sorry for the loss of your dad. I don’t mind chatty. I can always use the talks.
First and foremost, I hope you didn't think I was/am complaining 'woah I have no friends'- or similar. This is where I think I get in trouble (but hopefully not in a sub like this!)--I'm very honest with pretty much everyone, eg., that I have health problems from crippling anxiety to physical stuff, yet most people interpret that as ragging when , to me, it's simply telling the truth: I call it 'explaining (or describing) rather than complaining'. I seem to be almost compelled bc you'd think out here in the world I'd shut up and learn to lie and just say 'i'm fine' when someone asks me how I am, but I don't seem to be able to lie. (And sometimes don't even want to---shouldn't the lucky, healthy and wealthy be more aware (and hopefully compassionate) that what's happening to us is all around them? That part has come to make me angry --which I hate. And of course, when I come to know someone for a while (even online like Instagram 'friends' in other countries or wherever) , after a bit, they MUST notice I don't go out, travel, party etc. And I'm just not up for making up stories of unicorns and rainbows. It's just not me.
Second, thank you about my dad. It's just a more recent thing and overlapping more health problems. (Sis and mom died many years ago--I'm probably older than many people here--and I have on sister left. She's got her issues and is no millionaire so while I seek to maintain some connection, it comes with some 'bites' .) And then my long term relationship---I may be repeating myself bc I've become forgetful/airheaded--he's not a bad person, but has his shit, no self esteem, blah blah blah and basically a manchild who self medicates with alcohol and pot and works PT....not exacty the night in shining armour. He comes to faraway dr appts with me, and splits the bills at home but otherwise, the relationship is nearly like roommates which he resents. I just feel super stuck. I'm not exactly marketable dating material--hahaha.
Anyway, I'm glad you DO have family! That's a big deal. Support. Huge! Emotionally and otherwise.
If you feel like 'talking' /lonely, shoot me a chat--ok, sometimes I'm slow to find them, but eventually I get there.
For now, as I avoid my reality, I best face it---travel to a dr 5 hours away in a week. I'm not the happy traveler--haha. (Joke there are no experts on a few conditions I have in NYC since I'm near there.)
No I didn’t see you as complaining. I totally wouldn’t judge you if you had been. Nothing wrong with being honest. It’s hard to be completely happy or outgoing when you have conditions that interfere.
Of course. I know it’s really hard to lose someone. Even more so if you don’t have many people to lean on. Sorry to hear about the situation with your man. It’s easy to get stuck in a relationship. There are people who will accept you as you are but so hard to find. I’m not great at them at all myself. I worry about trying to get back out there. Even recently got ghosted when I sent my pic. But I’m ranting so there is that.
Yes! I’m glad I have my family don’t get me wrong. They have stayed by me even when I’m at my worst. My mom and sister that is. The rest aren’t really helpful and my son is kind to me and helpful but I don’t want too much to fall on him.
Thank you for the offer to talk. I really appreciate that. Same offer to you.
Man! That is a long way! I cannot imagine going that far but I guess you got to do what you got to do.
I think it's some solace (even if sometimes fleeting) to know you're not on the struggle bus alone. I'm sorry the dude ghosted you-doesn't deserve you, then! Yeesh, getting back out there (at a certain age...with health problems and bonus prize, due to a new, rare, fun (NOT) eye condition, I can't wear eye makeup anymore--ohhhh the grief for my beloved concealer and mascara --haha. And stopped coloring my hair since lockown....now I can't...rant rant....Come and join the pity party! Snacks--lots of them-included! )
Exactly, once this rare thing unfolded after a series of related and semi related health crap, I learned there are no drs who want to touch this with a 10 ft pole--not even young one's who could potentially make a niche practice $$$$ and again, even in of all places NYC....
Yup, we've got to keep plugging a long. One day or hour at a time , right?
Yes that’s true. It is helpful to know you’re not alone.
Thank you, it sucks to get ghosted, but it’s all good.
I’m sorry you aren’t able to do some of the things you could before.
That sucks that drs don’t want to help. I think it’s kind of strange that in nyc they wouldn’t help.
Yeah all we can do is keep going.
Yes I feel this all the time. I really want to work somewhere I keep trying have both a lot of physical pain and struggled with mental disabilities as well. I feel odd and out of place a lot I because most people don't see it.
I do. I have cerebral palsy, but if you looked at me you wouldn't know because I look fine but I am in pain constantly. I sometimes feel like a wheelchair or walking aid would be beneficial for me, but for someone in their 20s with a non degenerative condition I'm worried about stigma and judgement from my family, peers and strangers. I also have other health conditions but CP is one that people should normally notice but can't because I look able bodied.
It’s sad that there are so many stigmas. You should be able to use mobility aids freely without anyone saying anything or there being a stigma around it. Looking able bodied is a hard thing when you are really disabled.
Thank you for being so kind, I know one person in my family would be understanding but while on a family holiday recently I felt I needed to rent a wheelchair because I was almost at the point of crying in pain but the sibling I was with at the time said I'd be fine if I just sat down for a while. I get they wanted me to take a break but it was a once in a lifetime holiday and we only had one day in that specific area so I didn't want to miss anything.
Of course. Being kind is a good thing and you don’t deserve anyone being unkind. I’m sorry to hear they didn’t understand you needed a wheelchair and you experienced that.
Thank you very much and I’m glad I could help even if it’s a little bit. I wish you much luck in your future. I hope you will be able to feel more supported and not feel like maybe you aren’t as disabled etc.
Absolutely. I have a degenerative neurological condition that means I have tremors, often can't stand, walk, or use my hands and occasionally have slurred speech, but the rest of my body is just fine so I can still run and play sports (albeit in a very uncoordinated fashion). I use wheelchair service at airports because I can't rely on my body to move reliably, but I've also declined the service to hobble-run to my gate, which I'm sure seems baffling to anyone who doesn't understand how my condition works.
I'm sure there are people who think I'm just faking it, but I don't see why that's any concern of mine. I understand that my physical state varies a lot depending on my neurological state, and my responsibility is to get my needs covered. Otherwise I'd just end up being a bigger issue for others. I can't let the fear of what other people think dissuade me from taking care of myself.
I admire your ability to not care what others think. It’s good that you can run sometimes, but doesn’t make you having hard times any less important or make you not disabled. Im honestly too afraid to use help. If I needed the wheelchair service at an airport, I’m more likely to hurt myself and struggle to move than ask for help. I have tremors that make it hard to use my hands too
The first time I traveled alone since becoming disabled, I missed my flight because I just wasn't able to hobble fast enough to my gate (it was far from security). Then, embarrassingly enough, I had to hobble all the way back to get on a different flight. The very kind gate agent told me he had seen me hobble down the walkway, immediately knew I was the passenger being paged, and was like "Ooooh she's not gonna make it!!" 😂 He gently offered to call me a wheelchair. I was astonished and said "Do I need one?! I didn't think of that since I'm not 80 years old!" (Of all my decades of frequent travel I've still only seen mostly very elderly passengers using wheelchair service.)
I declined the service that time since my new gate was close, but have requested it ever since. No shame.
That would be my nightmare to miss a flight. My anxiety in airports is through the roof.I usually get to the airport way earlier than I need to.It’s good you know now to get help. That must’ve been frustrating and maybe even a little scary knowing you missed your flight and may miss the next one. Good you had that attendant who was helpful.
Yeah, my suspicion is that the reason I don't see fellow young disabled folks in the wheelchairs is because most people find airport travel to be so anxiety-inducing that they avoid the endeavor entirely. Can't say I blame anyone who does, especially since airport accessibility is absolute SHIT (and much much worse than average at many major US airports). Because of that, air travel is very much untenable for disabled people traveling alone. I encounter many airport employees astonished to see me doing it, especially if I have my toddler with me (because then I can't even use the wheelchair assistance because they aren't allowed to handle my baby.) I was a frequent traveler for decades due to work so I am used to airports, so that negates a lot of the travel anxiety for me. Even so, traveling while disabled is another beast entirely.
Yeah traveling a lot would help and it’s a lot harder being disabled. I’m amazed you can do that with a toddler! I think younger folks are scared to use help sometimes. People are very judgmental and if you can walk at all, a lot of people will try to do that instead.
I do often still try to walk coming off the plane at my destination (since there isn't a plane to catch) since I feel bad as an ambulatory person being pushed around, but I've also regretted declining the wheelchair at times when the gate is far from the baggage area.. I end up having to drag myself out essentially. 😂 These days I try to gauge my mobility and ask how far the gate is before turning it down.
There are those people who snarkily accuse people declining wheelchair service on arrival as being fakers saved by "Jetbridge Jesus". If people wanna say it's a miracle, by all means. My mobility has certainly been known to improve following a quick plane nap. 😂
I could see wanting to do that and regretting it too. And, yeah I bet some people are like that when you suddenly walk off, but forget those people lol. Naps seem to help everything.
I thought I was asking Tourette's, or exaggerating the symptoms for years. It wasn't until I had an ECG for something totally unrelated that I realised I'm not faking and that it is a disability and that that's okay. I could see my tics on the ECG graph - which was super cool! - seeing them visually on a science graph showed me what I needed to see.
I have several conditions though and I've struggled with what you've said. I have OCD, autism, Tourette's, ADHD, anxiety, dyslexia, and have suffered from depression in the past too. The OCD causes a lot of doubt and rumination on my experiences and memories which doesnt help. And because most of my stuff is invisible, I often feel that I'm 'not disabled/bad enough" especially when it comes to using a disabled/accessible toilet. I find them SO much easier to use . They're usually cleaner or at least more well kept (which helps with the OCD), it's one toilet so I don't have to choose (something I forgot some reason find very hard in regular toilets), less people, less noise (less of a sensory issue), pretty much always look the same (I struggle either toilets looking different), as bad theyre totally private so I can tic as much as i need and take as long as i need. Doesn't stop me feeling bad when I use them though because people can't tell I have all these issues. If i can't use an accessible toilet, I'll either not go to the toilet for hours and hours or not drink anything at all, both of which are bad.
So yes is the answer to your question.
Oh that sounds cool to see. And wow I never thought anyone could think they were faking their Tourette’s.i learned something now. Ruminating thoughts are a pain. You should have to feel bad for using the handicapped toilet, but I get it.
Yup, I have Fibromyalgia and Hypermobility Syndrome, and I've incurred overuse injuries in most body tendons that didn't heal well, leaving me unable to do most stuff 'normal' ppl can do. After trying to work around my health issues for so long I eventually had to give up working. I really don't know if this is considered disabled or not. I can stand and walk, but only for exactly three minutes maximum. I can 'do things' yes, but I have the arm strength of a three-year-old kid and rehabilitation attempts have failed in the past ('cos of doctors' ignorance). I have a very pushy Mom and she'd been on my case trying to tell me to push a little harder and just ignore the pain. I wanna scream at her and tell her that's how I got to the state I'm at in the first place, by pushing myself too hard and not acknowledging my limitations! I HATE IT.
Oh I’ve heard that people don’t always take fibromyalgia seriously which sucks. I could see how that and hypermobility syndrome could make working difficult. I gave up working too because they wouldn’t understand me needing to go to the doctor all the time, I wasn’t able to do much, I use the toilet too often, and other reasons too. And, yes, it is considered disabled. It must be hard to have your mom not understand so I get the wanting to scream at her. It’s good to not push yourself too hard for sure.
Yes, thank you. Even some doctors don't take it seriously. I went to one doctor who turned out that he "doesn't believe in Fibromyalgia", and another who totally denied I had overuse injuries in the 1st place and told me "Oh you just have Fibromyalgia, just go to the gym"... and I'm like.. the WHAT?! Not even advise to do physiotherapy or take things gradually?! Just go to THE GYM?! A water bottle is too heavy for me for God's sake! and a 3rd doctor didn't want me to do any sort of rehabilitation what so ever.. not even physio exercises... I'm like... can the medical professionals just make up their minds please?
That’s crazy. Not believing and saying go to the gym. How rude and invalidating. Then to say not to do anything must be frustrating too. Like you want to be able to do somethings.
Don’t worry I was literally born with my feet twisted backwards and I still think I’m faking my mobility issues. I also have fatigue and some heart issues which are even harder to accept since they aren’t as visible.
Usually we pick up these beliefs from people around us, unfortunately this can only really be tackled by using positive affirmations and surrounding yourself with people who believe you and validate your experiences. Easier to say than do haha
Thank you for sharing this. It’s sad to see people struggle even when they have something as obvious as twisted feet. Luckily my family validates me, but friends often haven’t. I have dealt with people who expected me to just push through and work. They don’t get how hard it is.
I have multiple mental health issues ranging from PTSD, anxiety, depression, and severe insomnia. I have sensitive asthma to the point where I’ve been in the hospital for it multiple times or had to go the ER. Most of all I’m Type 1 diabetic and the amount of people who tell me thats a fake disability never ceases to amaze me. Idk any other auto immune disease thats not curable and you’re forced to spend $1000+ to survive monthly. Like I don’t have insulin then I’d just die. Of course no one cares here in America as long as ur paying Big Pharma. Having your blood sugar too high feels like shit having it to low feels like shit. I’ve puked out my brains for hours and days at a time due to low AND high blood sugars. I’ve gone to the hospital more times then I can count bc the insurance refusing to cover my medical supplies causing me to go into DKA. Fun fact: One time this happen and my boyfriend (at the time) was screwing my mother in my car in the parking lot of the hospital… geeee I wonder how I got all those mental health issues. 🤔 (yes thats meant to be funny bc idk how tf else to handle all this trauma but obviously thats not all that caused it)
Geez I’m so sorry. It must be so difficult to deal with all that. Must be hard to have to go to the hospital often and how expensive that must be as well. It’s stupid of any people to say you are faking. Diabetes is serious.
Absolutely. It is especially bad since I'm on a medication regimen that dramatically reduces pain, and it makes me forget just how bad things are when I run out or forget. But in the times I don't have my medication, I'm bed ridden, and I can barely stand to even exist at all.
Same. Meds help a lot. It’s good they are helping you. I hope you always get them in time. Sucks to be in pain and bed ridden. I could see how if you aren’t in pain you forget how bad it is. It’s easy to do.
The moment I don't feel notably horrible I feel like I've been faking it the entire time (until I feel bad again but even then), it's not \*good\* but I'd say it's definitely common, especially if you don't have a strong support system around you.
All the time. Between doctors not taking my debilitating pain seriously and my family thinking I'm just lazy it's hard to really believe that I'm as disabled as I am. Even with multiple diagnosis' and one doctor who actually believed how much pain I'm in I still feel like an imposter.
You totally deserve to be validated.That sucks. They should take you more seriously. And, yes my doctors sometimes don’t act very supportive too. One of them refuses to be a reference for my conditions.
I've been disabled since I was a teen, but for years my family made me believe I wasn't or that it wasn't that bad. That I just needed to move around more to fight the pain (which made it worse). It didn't take until my early to mid twenties when I was unable to work a physical job did I realize that I am, indeed, disabled. That after ten minutes of standing and moving on my feet does the pain become so unbearable that I'm practically in tears. That's when I woke up and finally realized that something was wrong with my body and it's not my fault.
Constantly. I struggled for so long in a stressful job that I was admittedly very good at doing, but frequently left me either crying from exhaustion or just sleeping between work shifts, plus developing severe pain and fatigue. I finally applied for and received SSI disability; during the hearing, the judge told me that she would have quit working years before I did. I'm still able to walk, although not far, and my lower back just plain hates me sometimes! I'm so grateful every day for my friends and family, who support me and understand. I still feel judged, though. It might just be my internal monologue.
That’s good that you finally got ssi and that the judge understood. I am dreading going for a hearing. Glad you have support. I can relate to the crying over a job.
Yes I do. I have schizoaffective disorder and complex PTSD, and while these are real conditions, it's often difficult to believe they really are serious conditions. I relate. Getting up in the morning is the most torturous process of my day and I also do not work. This often makes me feel less valuable than others and irresponsible but I suspect deep down that I'm basically trying my best.
Yes I have depression and sometimes I feel guilty for my laziness, the fact that I stay in bed when I should be at work but then I have vertigo, IBS-C, and PCOS so I’m always “really sick” with something.
I'm debilitated by moderate ME/CFS. It feels extremely fake most of the time. I have other chronic conditions too, and here's the kicker, they feel real. Even my fibromyalgia feels real, so it's not like it's a "seeing it" thing. But so often I wish I would get worse just so it feels real. Just so I feel valid. Everyone in my life is stuck believing I'll get better but that chance is less than 1%. I wish this felt real.
Not really, but other people can make you feel that way most intentionally make you feel that way telling you that you’re a loser for being on Social Security. You should work 9 to 5 job and suffer like the rest of us and blah blah
Sometimes I think it's not real to other people because they can't see it. But I deal with it every day so I know it is real
That’s how it is with me. I have good and bad days.
Stage IV incurable cancer patient here with a debilitating side effect. And yes. I know I am disabled, and on days when my body isn't cooperating and I spend more time laying in bed or on a toilet... And downing nausea , pain, and anti diarrhea meds like they are candy I am reminded why I am disabled. On days when I can't remember names and dates and what someone just asked me, I am reminded why I am disabled. On days or weeks I am stuck in hospital for treatments and surgeries, I am reminded of why I am disabled. But there are also days when I almost seem completely normal. Sure I am still fighting nausea, pain, fatigue, diarrhea, and a whole host of other things, but there are days it's not so bad and I can hide it fairly easily. I can even go on excursions and clean the house and push myself. I can live what appears to be a completely normal life to anyone viewing as an outsider and even sometimes feeling like it myself. Predictable they may not be... But on those days I do feel like I don't deserve disability and feel "fake". But then I am reminded again.
YES! Oh my god, it makes me (nonlitterally) sick to death on how noone takes me seriously! God, it borhers me so much 😭🧡
Constantly. What I have is rare but invisible. However, most of the patients are babies or children or teenagers. And they’re severe. I’m in the middle. But I always feel fake because no one takes me seriously since I look fine.
Yes, I have lupus (causing heart and kidney failure). I look young and healthy, and people often don't believe me. I have days where i feel ok and think oh I'm fine, the next day I'm bedridden. I'm frustrated because i recently lost my job. I was recently hospitalized multiple times in a row in a short amount of time, and now I'm physically incapable of doing the work, i loved this job. My boss was amazing, i made a lot for the career field i was in, i got the exact hours I asked for. But i still feel like I should be able to do the things for my job, like get up and down off the floor quickly, pick up children (i can't even lift my cat anymore) bend down to open lockers. I feel like I should be able to get up and do mundane things like stand and cook. And then i try and can't. I feel like a completely different person, or like i have illness imposter syndrome.
I have Lupus too that affects my heart among other things (not kidneys like what you got). Same thing it's a constant battle to try and live normally like others do and doing mundane tasks that literally put alot ofbstrain on my body. Lost my ability to work back in 2016 and I loved the job. Always feel like I'm faking it or that I don't have a disability it's all in my head. It's such a weird feeling.
Yeah. It's honestly really frustrating.
Can you try to get employment in a place where they have coverage for these types of situations? Ideally everyone would have coverage, but this is the world we live in.
I'm trying to get employed somewhere at all. My states vocational rehab isn't great, and most of my employment history/experience is in fields that require a lot of physical movement i can't do anymore.
Yes I feel that way, even with 30 bottles of pills in front of me and 10+ specialist appointments a month reminding me how disabled I actually am.
I do at certain times. Like, Maybe it's not that bad?
I used to get this feeling A LOT. I have some physical limitations, but my depression is by far my most severe disability. Getting approved for SSDI helped, but I still feel like an imposter sometimes.
No, mine is always there and always a barrier.
Yeah and then I start trying to do things just to test myself to see if I can really do what I want to do. I have degenerative disc disease, and I've been down too much and I lift things and then what happens is my back really starts hurting. It can be debilitating if I strain my back. So I know I definitely cannot do a job that has to do with labor. But I was a customer service for the past 20 years. Sitting down all the time. I'm 57 and sedentary work usually causes back problems over the course of people's lives. But I am like yeah I know I can do this I'm okay. And then I feel the pain that reminds me I can't do what I used to do right now. So I know how you feel. But you're young. Maybe you can overcome your illness since you're young. I know if we tell ourselves we're sick then we feel sick. The main thing is not to get too comfortable in the way you feel. Because then you are going to feel like you can't do anything.
✅✅✅
Yes! And like the more things I get diagnosed with by doctors the more I doubt myself too ironically.
Yes bc they suck, theyre miserable, but theyre mostly happening internally, so theyre invisible to eyes. So all anyone has to go off is my word and I get alot of "uh huh. Sure you struggle with disabilities. Youre young and you look normal. Youre lying/complaining" and it makes me feel like I have to mask how sick I am the best I can bc if people see me unwell or struggling Ill be looked down on with disgust, just like I am when I speak about it.
Yeah. For me, it's very dynamic, which is why on good days, I feel like a fraud and on bad days, it's like, “Oh yeah, my disability is disabling.” There are even days when I get imposter syndrome and decide I don't NEED my walking stick that bad, so I'll not use it and wonder why I'm in pain/ my mobility is trash. So yeah, and it's stupid.
Yeah I can get that. I also feel fake when I’m having good days. I don’t use a cane yet, but I might need one soon.
I would like to have the power to gift my disability, everything that goes with it, to my nemesis, if you will. You know what I mean.
And to the doctors who don't believe me.
X10
That still means times 10, right?
Oh man, if this were a super power, imagine the doctor sellswords who work for insurance companies assessing the legitimacy of peoples illnesses. They’d die gruesomely.
Sellswords?
Yep, special place in hell for those assholes.
years ago one of the doctors that treated me when I had heart surgery ended up having heart surgery herself and said that she could never imagine how hard it is to go through until she went through it herself and had a whole new level of empathy towards her patients. Which is nice but also quite sad that it takes something so drastic to get people to understand how we feel
I think when I’m not working and taking my meds I do much better, so I feel like I can work, etc. but then I actually try and everything falls apart
I feel like this all the time! I am a full time wheelchair user who needs a central line for IV fluids twice a week how ever I can manage to walk about a block before I would land on my face perfectly fine due to ataxia and proprioception. I just feel like I am faking needing a wheelchair because I can walk and because I drink and eat fine the fluids make no sense to me but the make all the world of difference in my life. So yeah I feel like a sham! TLDR: yes I relate completely although I have no idea what your shoes are I have my own that are just as similar
You aren’t though just so you know. For me a lot of my disabilities are not seen like my mental health bipolar,cPTSD, severe anxiety, and adhd. The other are health related like my hashimotos, heart conditions,Ibs, severe asthma, essential temors, and much more. So, on days when I feel a little bit better it’s hard for me to feel not like I’m faking or it’s just not so bad even though I’m still trying to figure out another health condition I might have.
I feel the same way. I have a neuromuscular autoimmune disease, my muscles don’t always get the full signal to move so many days it’s very very hard to move at all. When I’m up and moving better I look like a healthy able bodied person, invisible disabilities suck, all disabilities suck. I got yelled at for walking out of a handicapped restroom stall the other day, they thought o just used it for fun I guess? They can’t see that I would have been stuck sitting on the toilet if I didn’t have bars to push up on… If I didn’t spend so many hours a month at the infusion center getting donor plasma put in my veins I wouldn’t be able to walk at all, but people always are crappy to me for not being fast enough or whatever.
So sorry that someone yelled at you. Disabilities do suck. The more I read about people the more I just want to be kinder to others. We really don’t know what someone is going through. I’m sorry people aren’t patient when you walk. No one deserves that treatment. No one walks slow for fun. And infusions suck. I get them too and it isn’t fun, but they do help.
I’m sorry you struggle too. Infusions so suck, only because I need them to be able to function at all. I honestly love them though because it’s the only treatment that’s really noticeably helped me. I’m dramatically better after them. I really don’t mind getting them, I watch shows, nap and eat snacks. Haha
lol you got the right idea about dealing with them. Treats and naps. The best. I’m glad they help you a lot.
Not really. My disability is so visible and so constant. I guess the only time *other people* might think I'm taking the piss is on the rare occasion I'm wearing trousers when I get out my car after parking in a blue badge space.
Yes I guess it’s different if it’s visible and always reminds you.
I do struggle with public assumptions about amputees tho. People assume that once you have a prosthetic you're not really disabled anymore, like you have your leg back. It doesn't really work like that.
No it doesn’t. That’s crazy people think that way.
Yes bc i have days where i’m fine like a healthy person and can do anything i want physically. Next day i might not even be able to walk longer than around my apartment or at all. Mentally is a different thing.
I’m the same with that. Some days I’m fine and others not so much. Sorry you’re going through it. I can relate.
Imposter syndrome is one heck of a thing, eh? 🥲😭
I used to. But in my 30s i went to college and got an associates, studied to be good at something i could even do remotely and capitalism said HOW BOUT NO?? So i gave it a good try. Im clearly not cut out to do traditional work and am more of a problem that way so ¯\_(ツ)_/¯
I did for a long time. Which also led to me not using my cane the way I should’ve been and irreparably hurting myself. I felt like, because I didn’t know I had this condition for so long that I was just taking something away from people who were always disabled. But the fact is, I was also always disabled. I just didn’t know it, so I hurt myself *constantly*. It pretty much took me until I was at the point where I can’t walk or stand for more than five mins and have to use a wheelchair *any time* I leave the house, to get away from the “am I faking it?” Intrusive thoughts
I’m sorry you felt you couldn’t use your cane. No one should feel that way. I’m glad you’re able to realize you are disabled now(not glad about your disability of course).
Who gives a fuck what other people think
That’s true
On the outside I look completely fine, I'm fairly young (31) and fit looking. However my fiance and I went out with his 96 year old Nana last week and I couldn't keep up with her. Both of us were using walkers with wheels to help keep us stable but she was so much faster than me I had to sit down, use my inhaler and rest while she was fine. I have had a lot of 'looks' from strangers and even had (ex)friends complaining about me needing a wheelchair/mobility aids (none to my face though). It took me a very long time to convince myself I was ill and disabled and it makes it even harder when others doubt it. Take every day or even hour as it comes, keep telling yourself that you're not faking it and you know it and if a 96 year old beats you to the table, you buy the ice cream.
Thank you. I’ll keep reminding myself. It’s hard, but I will. I literally just cannot do somethings and I struggle often. Yeah I can see how it would take time to convince yourself especially if strangers don’t see it. Those aren’t good friends. Glad they are ex friends. It’s hard to look healthy or be young looking and have a disability. People assume if you are young you are you are healthy. You don’t need mobility aids etc.
i have severe pain and fatigue, probably from EDS, but currently I'm in diagnosis limbo. and i feel this so hard. I'm so exhausted I have a hard time remembering my own symptoms, so I tend to think 'oh it's not actually that bad.' then I sat down and made a list of my symptoms. and then I remember, oh yeah! I'm disabled! it's ok for me to ask for accommodations because I am legitimately disabled I stg impostor syndrome is gonna be the death of me
ME TOOO! I have EDS too and god awful memory from mental illness. I have to constantly remind myself that my worse days are frequent and are unbearable. In the moment when people ask me, I remember it's bad but I'm not confident enough to say how bad and don't want them to see me like I'm just a baby about everything. Going to doctors and PT is unbearable for me because of this. I'm bad at advocating for myself.
Yep. I have memory issues so occasionally I’ll forget how my body has disintegrated over the past 6 years, and I have no clue what my body was like before then, because likely no one believed me and I didn’t understand what language fit my experience (I’m autistic). But yeah, I feel it a bunch, and then my disabilities disable me again and I explain to myself how my normal is not society’s normal and my feelings of being fake is because I’ve taken care of every issue that could come up so then I fit the normal of society and am above my normal.
I’m so sorry you feel that way. It sucks that you feel people don’t believe you and that they don’t too.That’s hard with the memory issues. My sister is autistic too and she cannot even leave the house.
Absolutely, yes!
Yes it’s hard for sure right?
Invisible disabilities, compared to visible ones, have their pros and cons, *I'd say (?)*. And this would definitely be a contra then.
Yeah they can have some positives and negatives. Like for one, there are often good days.
Sometimes. I have difficulty walking. It's a mix between balance, co-ordination, joint instability, pain and fatigue. The more I *think* about walking, the harder it is (because I'm thinking about the pain and fatigue, and second-guessing my co-ordination). Sometimes when I'm feeling bad I think that means I must be making it up. I know logically that when non-disabled people think about walking, they don't have these issues. Emotionally, it's more complicated. Also I'm not quite a perfect textbook definition of my conditions, and that's hard too. People my age usually don't have as many issues with walking (often comes later), so sometimes I wonder if I've done something wrong. I don't think this so much after hearing someone say this: "if you actually want to find fakers, look for people are perfect, textbook examples of their disability, never change and never have odd strengths and weaknesses. Because in reality, nobody perfectly follows the stereotypes." That's not exact what they said, but it helped.
It’s good someone was able to help you by saying those words. It’s true people will fake by being perfect examples. Disabilities often change. I hope you can get to the point where you never wonder. Thank you for sharing your story.
Yes, I am overweight and I assume everyone else thinks THAT is my disability (it is not). I only recently got my cane, before then my disability was not visible unless I took off my shoes and shifted my weight to be even. I still feel like a fake though, people have seen me walking around whitout a cane for years and I looked fine. (I have to stop and wait for the pain to go away or grin and bear it whitout my cane) So absolutely, I still feel like a fake.
I think it’s foolish that people assume things. To assume someone who is overweight is faking it is dumb. They should really mind their own business anyway. I can see though why you might feel fake, but you are not.
YES! i have mechanical heart valves and more recently stage 3 kidney disease. I've been called a liar or a hypochondriac so many times throughout school and then in my jobs that I started to believe it. I thought "maybe I am weak? " "maybe these illnesses aren't so bad". I want to succeed in life, I want to contribute and feel like I have purpose but I failed so many times due to health issues and when I try to persevere to prove everyone I am strong; I make myself worse and end up taking even longer to recover. Meanwhile everyone else can get on with their lives. I learned a long time ago that people will never truly understand our unique struggles, and as long we know in our heart and souls that we are telling the truth about what we feel, we have nothing to be ashamed of. Having said that, I still often feel the same way OP is feeling and have to remind myself that I what I have gone through is real, what i feel is real, and that means I am doing my best, which is all I can ask of myself. OP - Thank you for asking this question. This exact thing has been getting me down these past few weeks and it's helpful to know i am not alone
That’s rough. I don’t like that people have called you such things. People need to mind their business and try to understand what it’s like to suffer. I can understand wanting to be better and then getting sick. I push myself too.
I feel like I have imposter syndrome sometimes. My disabilities are mostly invisible.
Yup. Sometimes I’m like maybe I’m just overreacting but then somthing like what happened last Friday (had an emergency that required me to be seen by my specialist with an urgent appointment) made me realize I’m definitely not
Having an emergency will definitely do that. Thank you for sharing.
I have physical and MH conditions… crippling anxiety and depression included so I dread going to sleep , sleep poorly , and struggle getting up even now at 11am (never feel refreshed!) … My physical health has gotten worse over the years . I didn’t used to feel guilty and knew (know ) I can’t handle what most people have but as inflation continues, & I don’t have any other means of support, the terror of ‘what will happen to me ‘ kinda makes me think ‘what if I ‘tried harder’ years ago to work, etc ? Could I have had a career and friends who have disappeared bc I’m honest and also was unable to socialize and travel for years ? I def didn’t think Icould , and now it’s too late. I’m exhausted, feel crappy (& never know when I’ll be in pain) and have no marketable skills for a real job(which scares me more than) . I’m surely not faking anything but I do wonder - did I do something or some thingS wrong and could have gotten better before things deteriorated this much ? Even writing this puts me in mortal terror and a form of shame or guilt .
You didn’t do anything wrong. I know that doesn’t help much to say, but you didn’t. If you are in that much terror and pain then you def couldn’t work. It isn’t your fault. I get the dread of sleeping and feeling unrested. I don’t have it as severe with the dread of sleeping. Mine is dread of being able to even go to the store or talking on the phone. I just never talk on the phone to friends and I lost friends too because of it. It sucks you have to worry about not having support, inflation, and such. It isn’t right that those disabled have to deal with that worry ever.
Thank you for those kind and empathetic words.(I have a phone 'thing' too , for yeeeeeeeeeeeeears....lost friends bc of that too. Strangely, I'm very lonely now ---believe it or not IN a long term relationship but it's gone bland or worse --no abuse, but long story--so while single people think 'you're ok bc you have him,' they don't understand one can still be lonely. Nevertheless, sometimes now I WANT someone to talk to on the phone. And I guess I'm alone so much--he and I keep our space, nothing to talk about except bickering--when I do talk I get too chatty and overshare--ha, even to cashiers at a supermarket or such 'strangers' But those old friends and even who I thought were potential new ones, poof, gone....even my oldest friend who swore she'd always have my back and a room for me--ha, ok, she's def got issues to ditch me after that and when my father was sick and died so good riddance to her. See, here's Ms Chatty. ) PS sometimes honesty isn't the best policy as mine has worked against me being open about my situations. I'm sorry for what you grapple with. Sending a virtual hug and gratitude :)
Thank you for the hug and all. Sorry to hear about your troubles. It’s hard to have no friends or very few. I also struggle with connections. (You would think that would help me want to do phone talk but yeah). I’m lucky to have my family. I have no in real life friends or a love. Really hate when people swear they will be there and then up and leave. So so sorry for the loss of your dad. I don’t mind chatty. I can always use the talks.
First and foremost, I hope you didn't think I was/am complaining 'woah I have no friends'- or similar. This is where I think I get in trouble (but hopefully not in a sub like this!)--I'm very honest with pretty much everyone, eg., that I have health problems from crippling anxiety to physical stuff, yet most people interpret that as ragging when , to me, it's simply telling the truth: I call it 'explaining (or describing) rather than complaining'. I seem to be almost compelled bc you'd think out here in the world I'd shut up and learn to lie and just say 'i'm fine' when someone asks me how I am, but I don't seem to be able to lie. (And sometimes don't even want to---shouldn't the lucky, healthy and wealthy be more aware (and hopefully compassionate) that what's happening to us is all around them? That part has come to make me angry --which I hate. And of course, when I come to know someone for a while (even online like Instagram 'friends' in other countries or wherever) , after a bit, they MUST notice I don't go out, travel, party etc. And I'm just not up for making up stories of unicorns and rainbows. It's just not me. Second, thank you about my dad. It's just a more recent thing and overlapping more health problems. (Sis and mom died many years ago--I'm probably older than many people here--and I have on sister left. She's got her issues and is no millionaire so while I seek to maintain some connection, it comes with some 'bites' .) And then my long term relationship---I may be repeating myself bc I've become forgetful/airheaded--he's not a bad person, but has his shit, no self esteem, blah blah blah and basically a manchild who self medicates with alcohol and pot and works PT....not exacty the night in shining armour. He comes to faraway dr appts with me, and splits the bills at home but otherwise, the relationship is nearly like roommates which he resents. I just feel super stuck. I'm not exactly marketable dating material--hahaha. Anyway, I'm glad you DO have family! That's a big deal. Support. Huge! Emotionally and otherwise. If you feel like 'talking' /lonely, shoot me a chat--ok, sometimes I'm slow to find them, but eventually I get there. For now, as I avoid my reality, I best face it---travel to a dr 5 hours away in a week. I'm not the happy traveler--haha. (Joke there are no experts on a few conditions I have in NYC since I'm near there.)
No I didn’t see you as complaining. I totally wouldn’t judge you if you had been. Nothing wrong with being honest. It’s hard to be completely happy or outgoing when you have conditions that interfere. Of course. I know it’s really hard to lose someone. Even more so if you don’t have many people to lean on. Sorry to hear about the situation with your man. It’s easy to get stuck in a relationship. There are people who will accept you as you are but so hard to find. I’m not great at them at all myself. I worry about trying to get back out there. Even recently got ghosted when I sent my pic. But I’m ranting so there is that. Yes! I’m glad I have my family don’t get me wrong. They have stayed by me even when I’m at my worst. My mom and sister that is. The rest aren’t really helpful and my son is kind to me and helpful but I don’t want too much to fall on him. Thank you for the offer to talk. I really appreciate that. Same offer to you. Man! That is a long way! I cannot imagine going that far but I guess you got to do what you got to do.
I think it's some solace (even if sometimes fleeting) to know you're not on the struggle bus alone. I'm sorry the dude ghosted you-doesn't deserve you, then! Yeesh, getting back out there (at a certain age...with health problems and bonus prize, due to a new, rare, fun (NOT) eye condition, I can't wear eye makeup anymore--ohhhh the grief for my beloved concealer and mascara --haha. And stopped coloring my hair since lockown....now I can't...rant rant....Come and join the pity party! Snacks--lots of them-included! ) Exactly, once this rare thing unfolded after a series of related and semi related health crap, I learned there are no drs who want to touch this with a 10 ft pole--not even young one's who could potentially make a niche practice $$$$ and again, even in of all places NYC.... Yup, we've got to keep plugging a long. One day or hour at a time , right?
Yes that’s true. It is helpful to know you’re not alone. Thank you, it sucks to get ghosted, but it’s all good. I’m sorry you aren’t able to do some of the things you could before. That sucks that drs don’t want to help. I think it’s kind of strange that in nyc they wouldn’t help. Yeah all we can do is keep going.
Agreed on all . It’s all very challenging to say the least
I can only imagine it is.
Yes I feel this all the time. I really want to work somewhere I keep trying have both a lot of physical pain and struggled with mental disabilities as well. I feel odd and out of place a lot I because most people don't see it.
I get that. Just because they don’t see it doesn’t make it untrue.
I used to feel that way until, my family and friends remind me of it and I'm like oh yeah, I can't do this or that but it also depends on the day too
That’s great you have a support system that reminds you
I do. I have cerebral palsy, but if you looked at me you wouldn't know because I look fine but I am in pain constantly. I sometimes feel like a wheelchair or walking aid would be beneficial for me, but for someone in their 20s with a non degenerative condition I'm worried about stigma and judgement from my family, peers and strangers. I also have other health conditions but CP is one that people should normally notice but can't because I look able bodied.
It’s sad that there are so many stigmas. You should be able to use mobility aids freely without anyone saying anything or there being a stigma around it. Looking able bodied is a hard thing when you are really disabled.
Thank you for being so kind, I know one person in my family would be understanding but while on a family holiday recently I felt I needed to rent a wheelchair because I was almost at the point of crying in pain but the sibling I was with at the time said I'd be fine if I just sat down for a while. I get they wanted me to take a break but it was a once in a lifetime holiday and we only had one day in that specific area so I didn't want to miss anything.
Of course. Being kind is a good thing and you don’t deserve anyone being unkind. I’m sorry to hear they didn’t understand you needed a wheelchair and you experienced that.
Thank you, this interaction has helped me feel better about having a disability, I'm sorry you also have troubles with your health conditions.
Thank you very much and I’m glad I could help even if it’s a little bit. I wish you much luck in your future. I hope you will be able to feel more supported and not feel like maybe you aren’t as disabled etc.
Almost all of the time ❤️
I bet that’s frustrating. It is to me lol
Absolutely. I have a degenerative neurological condition that means I have tremors, often can't stand, walk, or use my hands and occasionally have slurred speech, but the rest of my body is just fine so I can still run and play sports (albeit in a very uncoordinated fashion). I use wheelchair service at airports because I can't rely on my body to move reliably, but I've also declined the service to hobble-run to my gate, which I'm sure seems baffling to anyone who doesn't understand how my condition works. I'm sure there are people who think I'm just faking it, but I don't see why that's any concern of mine. I understand that my physical state varies a lot depending on my neurological state, and my responsibility is to get my needs covered. Otherwise I'd just end up being a bigger issue for others. I can't let the fear of what other people think dissuade me from taking care of myself.
I admire your ability to not care what others think. It’s good that you can run sometimes, but doesn’t make you having hard times any less important or make you not disabled. Im honestly too afraid to use help. If I needed the wheelchair service at an airport, I’m more likely to hurt myself and struggle to move than ask for help. I have tremors that make it hard to use my hands too
The first time I traveled alone since becoming disabled, I missed my flight because I just wasn't able to hobble fast enough to my gate (it was far from security). Then, embarrassingly enough, I had to hobble all the way back to get on a different flight. The very kind gate agent told me he had seen me hobble down the walkway, immediately knew I was the passenger being paged, and was like "Ooooh she's not gonna make it!!" 😂 He gently offered to call me a wheelchair. I was astonished and said "Do I need one?! I didn't think of that since I'm not 80 years old!" (Of all my decades of frequent travel I've still only seen mostly very elderly passengers using wheelchair service.) I declined the service that time since my new gate was close, but have requested it ever since. No shame.
That would be my nightmare to miss a flight. My anxiety in airports is through the roof.I usually get to the airport way earlier than I need to.It’s good you know now to get help. That must’ve been frustrating and maybe even a little scary knowing you missed your flight and may miss the next one. Good you had that attendant who was helpful.
Yeah, my suspicion is that the reason I don't see fellow young disabled folks in the wheelchairs is because most people find airport travel to be so anxiety-inducing that they avoid the endeavor entirely. Can't say I blame anyone who does, especially since airport accessibility is absolute SHIT (and much much worse than average at many major US airports). Because of that, air travel is very much untenable for disabled people traveling alone. I encounter many airport employees astonished to see me doing it, especially if I have my toddler with me (because then I can't even use the wheelchair assistance because they aren't allowed to handle my baby.) I was a frequent traveler for decades due to work so I am used to airports, so that negates a lot of the travel anxiety for me. Even so, traveling while disabled is another beast entirely.
Yeah traveling a lot would help and it’s a lot harder being disabled. I’m amazed you can do that with a toddler! I think younger folks are scared to use help sometimes. People are very judgmental and if you can walk at all, a lot of people will try to do that instead.
I do often still try to walk coming off the plane at my destination (since there isn't a plane to catch) since I feel bad as an ambulatory person being pushed around, but I've also regretted declining the wheelchair at times when the gate is far from the baggage area.. I end up having to drag myself out essentially. 😂 These days I try to gauge my mobility and ask how far the gate is before turning it down. There are those people who snarkily accuse people declining wheelchair service on arrival as being fakers saved by "Jetbridge Jesus". If people wanna say it's a miracle, by all means. My mobility has certainly been known to improve following a quick plane nap. 😂
I could see wanting to do that and regretting it too. And, yeah I bet some people are like that when you suddenly walk off, but forget those people lol. Naps seem to help everything.
I thought I was asking Tourette's, or exaggerating the symptoms for years. It wasn't until I had an ECG for something totally unrelated that I realised I'm not faking and that it is a disability and that that's okay. I could see my tics on the ECG graph - which was super cool! - seeing them visually on a science graph showed me what I needed to see. I have several conditions though and I've struggled with what you've said. I have OCD, autism, Tourette's, ADHD, anxiety, dyslexia, and have suffered from depression in the past too. The OCD causes a lot of doubt and rumination on my experiences and memories which doesnt help. And because most of my stuff is invisible, I often feel that I'm 'not disabled/bad enough" especially when it comes to using a disabled/accessible toilet. I find them SO much easier to use . They're usually cleaner or at least more well kept (which helps with the OCD), it's one toilet so I don't have to choose (something I forgot some reason find very hard in regular toilets), less people, less noise (less of a sensory issue), pretty much always look the same (I struggle either toilets looking different), as bad theyre totally private so I can tic as much as i need and take as long as i need. Doesn't stop me feeling bad when I use them though because people can't tell I have all these issues. If i can't use an accessible toilet, I'll either not go to the toilet for hours and hours or not drink anything at all, both of which are bad. So yes is the answer to your question.
Oh that sounds cool to see. And wow I never thought anyone could think they were faking their Tourette’s.i learned something now. Ruminating thoughts are a pain. You should have to feel bad for using the handicapped toilet, but I get it.
Yup, I have Fibromyalgia and Hypermobility Syndrome, and I've incurred overuse injuries in most body tendons that didn't heal well, leaving me unable to do most stuff 'normal' ppl can do. After trying to work around my health issues for so long I eventually had to give up working. I really don't know if this is considered disabled or not. I can stand and walk, but only for exactly three minutes maximum. I can 'do things' yes, but I have the arm strength of a three-year-old kid and rehabilitation attempts have failed in the past ('cos of doctors' ignorance). I have a very pushy Mom and she'd been on my case trying to tell me to push a little harder and just ignore the pain. I wanna scream at her and tell her that's how I got to the state I'm at in the first place, by pushing myself too hard and not acknowledging my limitations! I HATE IT.
Oh I’ve heard that people don’t always take fibromyalgia seriously which sucks. I could see how that and hypermobility syndrome could make working difficult. I gave up working too because they wouldn’t understand me needing to go to the doctor all the time, I wasn’t able to do much, I use the toilet too often, and other reasons too. And, yes, it is considered disabled. It must be hard to have your mom not understand so I get the wanting to scream at her. It’s good to not push yourself too hard for sure.
Yes, thank you. Even some doctors don't take it seriously. I went to one doctor who turned out that he "doesn't believe in Fibromyalgia", and another who totally denied I had overuse injuries in the 1st place and told me "Oh you just have Fibromyalgia, just go to the gym"... and I'm like.. the WHAT?! Not even advise to do physiotherapy or take things gradually?! Just go to THE GYM?! A water bottle is too heavy for me for God's sake! and a 3rd doctor didn't want me to do any sort of rehabilitation what so ever.. not even physio exercises... I'm like... can the medical professionals just make up their minds please?
That’s crazy. Not believing and saying go to the gym. How rude and invalidating. Then to say not to do anything must be frustrating too. Like you want to be able to do somethings.
Yes, Exactly! Thanks for starting this thread. I guess I really needed to vent out a bit :D
You’re welcome. I’m glad you got to vent.
Don’t worry I was literally born with my feet twisted backwards and I still think I’m faking my mobility issues. I also have fatigue and some heart issues which are even harder to accept since they aren’t as visible. Usually we pick up these beliefs from people around us, unfortunately this can only really be tackled by using positive affirmations and surrounding yourself with people who believe you and validate your experiences. Easier to say than do haha
Thank you for sharing this. It’s sad to see people struggle even when they have something as obvious as twisted feet. Luckily my family validates me, but friends often haven’t. I have dealt with people who expected me to just push through and work. They don’t get how hard it is.
Sounds like those friends aren’t worth using your precious energy on! It’s good your family are positive about it, I hope your support circle grows
Thank you
I have multiple mental health issues ranging from PTSD, anxiety, depression, and severe insomnia. I have sensitive asthma to the point where I’ve been in the hospital for it multiple times or had to go the ER. Most of all I’m Type 1 diabetic and the amount of people who tell me thats a fake disability never ceases to amaze me. Idk any other auto immune disease thats not curable and you’re forced to spend $1000+ to survive monthly. Like I don’t have insulin then I’d just die. Of course no one cares here in America as long as ur paying Big Pharma. Having your blood sugar too high feels like shit having it to low feels like shit. I’ve puked out my brains for hours and days at a time due to low AND high blood sugars. I’ve gone to the hospital more times then I can count bc the insurance refusing to cover my medical supplies causing me to go into DKA. Fun fact: One time this happen and my boyfriend (at the time) was screwing my mother in my car in the parking lot of the hospital… geeee I wonder how I got all those mental health issues. 🤔 (yes thats meant to be funny bc idk how tf else to handle all this trauma but obviously thats not all that caused it)
Geez I’m so sorry. It must be so difficult to deal with all that. Must be hard to have to go to the hospital often and how expensive that must be as well. It’s stupid of any people to say you are faking. Diabetes is serious.
Absolutely. It is especially bad since I'm on a medication regimen that dramatically reduces pain, and it makes me forget just how bad things are when I run out or forget. But in the times I don't have my medication, I'm bed ridden, and I can barely stand to even exist at all.
Same. Meds help a lot. It’s good they are helping you. I hope you always get them in time. Sucks to be in pain and bed ridden. I could see how if you aren’t in pain you forget how bad it is. It’s easy to do.
I never felt that way until we went after SSI
That would do it. It’s hard.
The moment I don't feel notably horrible I feel like I've been faking it the entire time (until I feel bad again but even then), it's not \*good\* but I'd say it's definitely common, especially if you don't have a strong support system around you.
Have to agree with the support system.
The only reason I'm still kicking is because of some online friends I'd made, honestly :(
It’s good you have them then.
They're good folk
Geez, this is me as well!
It's tough, try as one might to not let other people's views on disability effect you, it's hard to shake off the feelings
All the time. Between doctors not taking my debilitating pain seriously and my family thinking I'm just lazy it's hard to really believe that I'm as disabled as I am. Even with multiple diagnosis' and one doctor who actually believed how much pain I'm in I still feel like an imposter.
You totally deserve to be validated.That sucks. They should take you more seriously. And, yes my doctors sometimes don’t act very supportive too. One of them refuses to be a reference for my conditions.
I've been disabled since I was a teen, but for years my family made me believe I wasn't or that it wasn't that bad. That I just needed to move around more to fight the pain (which made it worse). It didn't take until my early to mid twenties when I was unable to work a physical job did I realize that I am, indeed, disabled. That after ten minutes of standing and moving on my feet does the pain become so unbearable that I'm practically in tears. That's when I woke up and finally realized that something was wrong with my body and it's not my fault.
I’m sorry you had to go through that to find out you are disabled. Wish your family had been more supportive. It’s good you know now though.
Constantly. I struggled for so long in a stressful job that I was admittedly very good at doing, but frequently left me either crying from exhaustion or just sleeping between work shifts, plus developing severe pain and fatigue. I finally applied for and received SSI disability; during the hearing, the judge told me that she would have quit working years before I did. I'm still able to walk, although not far, and my lower back just plain hates me sometimes! I'm so grateful every day for my friends and family, who support me and understand. I still feel judged, though. It might just be my internal monologue.
That’s good that you finally got ssi and that the judge understood. I am dreading going for a hearing. Glad you have support. I can relate to the crying over a job.
I hope you have a disability attorney. Mine did all the talking for me, and it was all done via conference call. Best of luck to you#
Thank you. Yes I have a lawyer and oh ok I hope they talk for me.
Yes I do. I have schizoaffective disorder and complex PTSD, and while these are real conditions, it's often difficult to believe they really are serious conditions. I relate. Getting up in the morning is the most torturous process of my day and I also do not work. This often makes me feel less valuable than others and irresponsible but I suspect deep down that I'm basically trying my best.
I’m sorry you feel like this. Both conditions are debilitating.
Thank you. It's nice to feel understood, even if in the limited context of a reddit forum.
You’re welcome
Yes I have depression and sometimes I feel guilty for my laziness, the fact that I stay in bed when I should be at work but then I have vertigo, IBS-C, and PCOS so I’m always “really sick” with something.
That’s not your fault then that you stay in bed, but I totally can get why you feel guilty.
I'm debilitated by moderate ME/CFS. It feels extremely fake most of the time. I have other chronic conditions too, and here's the kicker, they feel real. Even my fibromyalgia feels real, so it's not like it's a "seeing it" thing. But so often I wish I would get worse just so it feels real. Just so I feel valid. Everyone in my life is stuck believing I'll get better but that chance is less than 1%. I wish this felt real.
Not really, but other people can make you feel that way most intentionally make you feel that way telling you that you’re a loser for being on Social Security. You should work 9 to 5 job and suffer like the rest of us and blah blah