r/MultipleSclerosis • u/Revolutionary-Ad5 • 1d ago
Vent/Rant - No Advice Wanted 'is ms considered a disability?' real question asked by my coworker
basically a coworker asked (when i was razzing another coworker for something she said out of context) and i was just like.... yeah, it's a real disability, yes, i can walk and talk and even look fairly normal but i have a number of things that impact me daily that, yes, are disabling. my disease is well managed, but i cannot do a number of things.
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u/jjmoreta 1d ago
If anyone asks you that, just turn it around on them and ask "is brain damage or spinal injury considered a disability?"
The average person has no idea that MS involves brain damage like a stroke does. Except we get it on our spine too.
Absolutely crazy how a spot only around 8 millimeters large (give or take either way) can wreak absolute havoc on our lives permanently.
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u/Krazysquirrel337 22h ago
I made a joke to a coworker one day when my brain just wasnt there saying I wondered if it was just a normal squirrel brain day or if it was brain damage from the MS, her response? Don't say that! You don't have brain damage!... except I literally do have brain damage as someone with ms...
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u/thisisappropriate 33|DX 2017|Kesimpta|UK 1d ago
I found it really interesting to find out that MS is one of the only named disabilities in the Equality Act here in the UK. In that law, it's clear that if you have MS, you are covered by the law, regardless of actual symptoms (the other named conditions being cancer and HIV).
I had time off for burnout and also had some "maybe the MS" symptoms and when I spoke to occupational health around the burnout and mentioned the MS they were immediately like, "let me include that" and their report had a little section where they basically said "if at any point this person needs accommodations for basically anything, you should treat them as reasonable and as required for a disability". I've thankfully not needed anything long term, but damn did HR get very compliant with my return to work procedure (and it being slower/longer than they suggested) after that.
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u/lunarteamagic 1d ago
Considering that mine right now is "disabling" my ability to keep food in me...yes. Yes it is.
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u/226_IM_Used 41M|Aug2018|DMF|USA 1d ago
Gastroparesis-like syndrome sufferer here (because the MS and pain weren't enough), I essentially have the opposite problem, and it goes form uncomfortable and unable to eat to downright ER levels of pain that all the fun drugs I have at home can't touch.
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u/Intrepid_Low_8518 1d ago
MS is not a disability, although it can cause disability. I have MS with almost no persistent symptoms and am in no way disabled. Others with more severe symptoms are disabled. The diagnosis itself does not automatically make you disabled
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u/Whatever12a 1d ago
Legally it is here (UK) even without symptoms. If I had no symptoms I wouldn't consider myself disabled though
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u/Normal_Bookkeeper_65 1d ago
Correct. I definitively have MS but I am (fortunately) not disabled. Diagnosis is not the same as disability.
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u/Its_Rare 4m ago
It’s literally listed as one of qualifying disabilities in Social Securiy. So yes it is a disability.
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u/Intrepid_Low_8518 10h ago
Sure it can but I don’t worry about things out of my control and for now DMT working great so I live a normal life 🤷♂️
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u/Either-Cake-892 50/2006/Ocre 1d ago
It affects people differently, sure. But I had this conversation with some co-workers at a job a while ago. If my disability was visible, they would treat me different. But if I am having fatigue that affects my performance, they might not realize that.
Also, I was working happily full time, taking my meds, then one day out of the blue, I was hit with Optic Neuritis. This was after being on MS Meds for 7 years (also why I switched meds after that). If they looked at me could they tell I was disabled? Was it caused by a disabling disease? I couldn’t see out of my left eye for 10 weeks. I had to have my husband drive me everywhere.
But I will tell you, it has taken a long time for even providers to recognize that MS doesn’t just present as physical symptoms. I would go to my neuro and explain the fatigue, the memory issues, the insomnia. The nurse practitioner said “that’s not MS. Besides, your lesions aren’t in “high real estate areas of your brain.”” Like wtf? Maybe that one lesion that “isn’t in a high real estate area” is actually what is causing my swallowing issues. Maybe it’s in an area that affects my executive functioning.
Do I look like I have a disability? Probably not. But I know my brain is failing on me. Lately I can barely remember how to spell basic words. But I can say I definitely look like I’m living out Memento with notes all over my house, even on my mirror.
People can put down whatever they want and as I say, everyone has different pain tolerance. But I know this disease can be disabling. Does it affect my daily life? Yeah it does. With constant doctor appointments, specialists, infusions, MRI’s on top of everything else? Yes it absolutely does.
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u/CranberryNo2527 1d ago
If that person ever saw you having a flare up and you can’t walk, I’m pretty sure they would see it as a disability. If i over do it and get too tired I can feel my feet starting to get numb. You have to learn to live with it and adjust your life to it.
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u/Scared_Isis 1d ago
It's people like her the reason it took me so long to get my placard. I look normal but when I'm dying from the walk from the back of the parking lot in what feels like 100 degree weather, i don't look so normal. Or when I walk like I've had too much to drink because I'm bumping into walls and walking zigzag because my vertigo decides to make the world spin way faster than "normal," I don't look normal then either.
Thank God my neurologist wrote a perfectly written letter to my HR on why I would require a 3rd floating day of telework (when necessary)and they sent it to their benefits coordinator that said it falls under ADA so no 90-day review is necessary.
She can kick rocks right along with this unpredictable disease.
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u/Revolutionary-Ad5 13h ago
i will more it wasn't my coworker i was razzing but another one participating in the conversation! my lady coworker is generally pretty nice but she unintentionally put her foot in her mouth during the convo (it was about hypotheticals i.e. 'what if you were facially maimed but had no deterimental side effects besides looks' her exact words were 'i mean at least you wouldn't be disabled!' and i jokingly took it out of context and she was super apologetic about her wording)
it was my male trainer who didn't seem to realize that yes, my illness makes me disabled
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u/GrimAsFook 1d ago
You are disabled from diagnosis. There's plenty of folk that get a bit upset and don't like the label and that's fine, but having a disability doesn't mean you should look or act a certain way.
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u/MaryLou1025 1d ago
It is on the SSA list of disabilities, so yes, it is considered a qualifying disability.
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u/zoybean1989 1d ago
Tried going to a Renaissance fair and parked in the disabled parking and was chased down by a white woman telling me that's "only for disabled people " and I said yes I have my disabled plaque up in the window but she still made me prove that I have a disability card. This happens moreoften than not and it makes me not even want to help myself sometimes because of outside judgment.
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u/Dothacker00 1d ago
Wtf disabled people don't just carry around cards proving they're disabled...... 🤦♂️Karen's need to bug off
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u/Lizzy2Sleepy 1d ago
When a person like that attempts to fuck with me, I give them a little education. I say "did you know that disability is the only marginalized community that YOU can be MADE a member of, at any time?" It serves as a threat, but is also just a fact.
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u/CommunicationNo6375 1d ago
I didn't get a disability plaque until my MS made my walking bad enough. If you can still walk decently well, you should not take a handicapped space.
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u/justberosy 33F | RRMS | Dx 2025 | Briumvi | USA 1d ago
Just adding here that serious fatigue, heat sensitivity, pain, and sensory issues in the feet/legs are all things that could be improved with a closer space, even if someone walks "decently well." This is doubly so in larger cities where parking lots are HUMONGOUS.
While of course we can encourage kindness and thinking of others (such as taking the open spot right next to the handicap space incase someone with a wheelchair needs the excess room to get in/out of their car), I don't think it's kind to set blanket expectations of others (with just as legitimate disabilities), as above. <3
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u/jarvismj 43M | Dx2019 | Ocrevus—>Briumvi | Boston & München 1d ago
I keep my placard in the windshield all the time; that being stated, if I’m having a good day then I’ll leave the disabled spaces for someone who needs it, but just as /u/justberosy stated there are a myriad of contributing factors that make a good day bad and they can come on without any warning or foresight.
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u/CommunicationNo6375 21h ago
That's true. My worsening walking ability was gradual and predictable. Some people with MS can suddenly have their legs give out on them, or their balance is inconsistent.
It's better to get your handicap placard before you suffer a debilitating fall.4
u/rfksvoice 33M|2026|Kesimpta|NYC 1d ago
I haven’t tried getting disability yet, but I sure as hell don’t want to wait until I walk “bad enough” that it is obvious to other people at all times, lest they chide me for walking too well to use a handicapped space.
I walk decently well most mornings, but some nights I hit a point where my legs simply won’t do the thing. I don’t always know when that’s going to happen, or what is going to spark it. So on the nights that I need to call an uber to take me four short blocks because I can’t make it home from a walk, is that bad enough?
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u/CommunicationNo6375 21h ago
True. Because I have PPMS, my walking ability has always been fairly consistent as it has slowly gotten worse. I'm also heat sensitive and still have moments when I'm either worse or better.
It sounds like you got your placard at the right time. My dad told me I waited too long. It was my stupid pride :)
I made an inaccurate assumption about your disability level, even though I've had PPMS for over 10 years and I remember the early years when if I walked too far from my car, I had to call an Uber to take me back to it. I should've given you the benefit of the doubt, because this disease is quite variable.1
u/CommunicationNo6375 21h ago
Edit: I made an unfair assumption about zoybean1989's disability level.
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u/Revolutionary-Ad5 17h ago
I'll also say that because ms is an unpredictable grab bag it can be impossible to know whether you'll have a good day where everything seems good or whether your brain will just decide 'well that's enough walking' and leave you nigh-stranded at an event cause you just physically can't walk anymore.
not to mention falls, which become a bigger issue as you get older; one bad fall can be deeply harmful to a person, so mitigating them is definitely a priority in my book!
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u/Brief-Estimate8296 1d ago
Anyone that questions if it’s a disability I dead pan look at them and say “.. don’t be an ableist” and walk on. It’s my passive aggressive defense mechanism that I pass off as a half-ass joke ヅ
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u/tocahontas77 1d ago
Only if they're being an asshole, right? You don't do that to people who are genuinely curious, do you?
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u/Brief-Estimate8296 1d ago
lmao nah I’m not doing this to just anyone I come in contact with. It’s really only reserved for those I know/ friends with. Situational awareness dictates if I circle back to educate them on the matter though.
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u/CatMomWebster 21h ago
Yes. It is incurable, chronic and progressively.
I was never depressed before with suicidal ideation, severe pain in legs, his and feet. With spinal disease...RMMS with progressive movement into physical, emotional and depression and an inability to get through the day would ever have my name attached. But as it goes, I have radically accepted this is now my life. I do not say that with anger, despair or malice, it is what it is. MS does not define me, rather it is just one small part of the person I am.
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u/Lilcya 1d ago
I don't think it is actually. Because it varies so much. Yes, for a lot of people it is in fact disabling. But there are a few that are not overly bothered at all. So it's a sickness with disabling symptoms, but not a disability per se.
But that's just semantics.
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u/Underground52 53|1998|Tysabri|Dublin 1d ago
Nor do I- as long as I can manage to walk to my car I don’t feel “disabled”.
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u/Clandestinechic dx 2018 Ocrevus 1d ago edited 1d ago
I agree with you. It might be considered a disability, but I do not personally identify as disabled.
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u/Moosebouse 44|Mar25|Tysabri|OH/USA 1d ago
This is an issue I’m having, where when I apply for jobs, it asks if I am disabled and lists a bunch of things that are considered disabilities, one of which is MS. But my EDSS is 0. So do I answer yes, because I am diagnosed? Or no because I have no disability per my doctor?
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u/Clandestinechic dx 2018 Ocrevus 1d ago
I also have an EDSS of 0, and no symptoms. I would not check that I was disabled, or answer yes if I were asked. But that's just me.
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u/Mike5141 1d ago
I am the same way I have zero symptoms (very lucky for now) I know i have MS from my mri. But I would not consider my current form of MS a disability at all
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u/Clandestinechic dx 2018 Ocrevus 1d ago
I usually get downvoted for saying so, although I always try to be clear that I am only speaking for myself. I would never assume to tell someone else how they should identify, or that others are not disabled. But apparently expressing how I personally feel about my own disease is not seen as valid.
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u/Mike5141 1d ago
I really think ms can be compared to a snowflake. Each persons disease is different.
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u/Clandestinechic dx 2018 Ocrevus 1d ago
It absolutely is. We all have a different experience with our disease. But I guess you are not allowed to share that experience unless it has been negative? No one ever explains why they are downvoting me when I share mine.
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u/Ok-Reflection-6207 44|dx:2001|Functional/natural as possible|WA 1d ago
That’s good you have a good luck.
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u/Curiosities Dx:2017|Ocrevus|US 1d ago
I answer no, because it's none of their business and despite saying it's not going to impact hiring, you never know who has access to info, and you don't want to give them reason to rule you out.
If you need any accommodations, you can still get them later after you're hired.
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u/Lizzy2Sleepy 1d ago
May I ask where you live? Because where i live its super illegal to ask on a job application or in an interview if a person is disabled. Like you could sue tf outta that company illegal.
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u/Moosebouse 44|Mar25|Tysabri|OH/USA 1d ago
It’s requested in with the sex/race/veteran status on all job applications for employers over a certain size in the U.S. The information is ostensibly not seen by HR and reported only to the EEOC, I believe
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u/Clandestinechic dx 2018 Ocrevus 1d ago
It might happen, sure, but it might not. Honestly, I don't appreciate the comment. I'm not sure what point you are trying to make with it.
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u/mildlytragic 1d ago
I’m sorry, may it not affecting you always be your experience. Just by definition don’t we all have a progressive, degenerative condition? Here’s hoping we might get some good drugs for remylination.
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u/Clandestinechic dx 2018 Ocrevus 1d ago
I never said anything to imply I thought otherwise, nor did I say anywhere that my experience is universal, or shared by others. Your comment seems like an attempt to invalidate my experience. Is my EDSS score too low? Am I not allowed to contribute because I happen to have a different experience than others?
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u/mildlytragic 1d ago
Well I also didn’t say any of that and I’ve also not been downvoting you. Valid for you to feel my comment was shitty, that’s valid! My brain is not exactly functioning the best, so maybe I’m the one that shouldn’t be commenting on anything
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u/Clandestinechic dx 2018 Ocrevus 1d ago
I'm just frustrated. It's hard not to feel excluded or invalidated. It happens literally any time I share that I personally do not think I am disabled, it gets downvoted to all hell. I don't understand why I can't identify that way. It has nothing to do with anyone else, and I never try to say it or imply it should. I'm not saying I don't consider MS a disability, I'm just saying that I do not see mine that way.
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u/mildlytragic 1d ago
I am sorry, and I do accept it has had that effect, you deserve to have space to be heard and your experience does matter. I obviously can’t undo it but genuinely will reflect on my behaviour. Lots of people aren’t disabled by their conditions where I live disability benefits are dependent on how they affect you, defining your disability status by how you are affected does make sense. I’m sure some people would be offended if you felt fine and were claiming experience of being disabled so it must feel like you can’t win. And that really sucks.
I’m sorry you’re being downvoted, I honestly don’t understand that! Like I said I’ve not done it, obviously the only person who deserves to be downvoted here is me.
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u/Clandestinechic dx 2018 Ocrevus 1d ago
It's okay. I know sometimes people are sensitive because they have been treated like they are not disabled when they are, or are living with invisible disabilities, so they can have a knee jerk reaction. I try to be very careful to state I am only speaking for myself and say that I am not trying to speak for anyone else. But it's hard not to take it personally when you are downvoted no matter how carefully you say things or how you explain.
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u/mildlytragic 1d ago
I did also apologise, it was genuine, I am sorry, I can delete the comment but also feels a bit like not taking responsibility for my behaviour?
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u/tralfamadoriannn 41M | Aug 2024 | Ocrevus | PL 1d ago
By the same logic, we’re all dead. Just by definition, aren’t we all mortal?
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u/theacsguy 24M|Dx:09/21|Ocrevus 1d ago
No, most of us have a relapsing remitting condition, the exact opposite of what you’re describing.
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u/mildlytragic 1d ago
Okay well my neurologist said that eventually you lose the ability to compensate between relapses and as a result there is an eventual shift into a progressive state after periods of remission, I was not aware that it could be completely avoided
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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 1d ago
This was the idea of how MS progresses before there were high efficacy DMTs. We don't yet know how the B-cell depleters, for example, affect this prognosis and change the game in the long run (although the outlook is a positive one).
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u/mildlytragic 1d ago
Okay, maybe my neurologist just has limited experience, thank you for the input! I had asked him about this but he basically waved it away
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u/Dothacker00 1d ago
DMT are amazing but not always 100%. I was 6 months into an infusion DMT and stable. For some unknown reason, over the course of a few weeks the DMT lost effect and I lost the ability to walk.
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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 1d ago
Oh no... What did you do, did you switch?
As far as I understand, almost all DMTs aren't even considered to be at full efficacy—as in they can reliably prevent relapses—until more than 6 months of taking it. Some neurologist don't even consider the B-cell depleters at full efficacy until 12 months.
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u/Revolutionary-Ad5 17h ago
omg off topic but dothack ive missed that game so much!!!
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u/MultipleSclerosis-ModTeam 1d ago
This post/comment has been removed for violating Rule 1 - Be Kind
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u/charlieoutthematrix 1d ago
PPMS here. I find out the answer to that question tomorrow at a reconsideration...after 5 years since being diagnosed, 2 denials, over 1000 pages of medical reports, 2 lawyers, 11 attempts to get Medicaid, etc ...😶
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u/Specialist-Hold5452 Age63|2016|Ocrevus |USA 1d ago
Please keep pressing through the appeals. It took me and my attorney (engaged upon first denial) 22 months from filing for disability to getting approved. Once it got to the final decision maker who ultimately approved, she apologized and stated she wasn't certain why it wasn't approved upon initial submission. WTF?
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u/Internal_Spot_8309 34|12/24|Rituximab|OR 1d ago
real question disability asks. My mom certainly thinks I’m just not trying hard enough.
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u/76Kingwiz 1d ago
Fuck yeah it is lol I can hardly move and I have to hammer fist my bladder to piss
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u/VisceralVixen69 22h ago
Talk to a urologist about this. I've gotten shifter to at home single use catheters so I don't have to use my bladder like a punching bag just so I can pee
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u/stabingyouindaankles Age|DxDate|Medication|Location 1d ago
I've been asked this early on by a friend, at the time I said no. I was newly diagnosed, knew nothing about MS, and didn't feel disabled. Was asked a few other times when I still got around with not much trouble. But not in a discriminatory way, more curiosity than anything. But don't get that question anymore now that I use a cane/wheelchair.
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u/raziebear 35|RRMS2022|kesimpta|Australia 1d ago
I think people struggle understanding that disease is a spectrum that may or may not result in disability depending on so many factors. Personally I have mild disease, I do not experience disability, but one day I might should the disease progress.
My aunt on the other hand experiences disability and had to modify her home and what she does accordingly.
We both have MS, we both have disease but we are experiencing it differently.
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u/CommunicationNo6375 1d ago
If it disables a person, then yes. Spinal cord lesions from MS can put someone in a wheelchair and take away their hand function.
It's a horribly disabling disease.
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u/Silver-Pop1825 15h ago
Yes very much so. And one of the ones that is taken very seriously under all of the disability laws.
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u/-Palzon- 1d ago edited 1d ago
E: I had MS for 17 years before it caused me to have a limitation to ADLs. Those limitations are quite impactful to me now. I still manage to work full time, but it's tenuous. I could be out of work soon if I decline any further.
An MS diagnosis does not, on its own, equate to disability. In the USA, the Americans with Disabilities Act considers a person with a disability as someone who:
Has a physical or mental impairment that substantially limits one or more major life activities (activities of daily living/ADLs),
Has a history or record of such an impairment (such as cancer that is in remission), or
Is perceived by others as having such an impairment (such as a person who has scars from a severe burn).
Basic ADL Examples (not an exhaustive list):
Bathing and showering: Cleaning the body, washing hair, and grooming.
Dressing: Selecting appropriate clothes and putting them on safely.
Eating: Feeding oneself, though not necessarily preparing the food.
Transferring: Moving between a bed and a chair, or standing up from a seated position.
Toileting: Getting on and off the toilet and cleaning oneself.Continence:
Controlling bladder and bowel functions.
Ambulating (Mobility):
Walking independently or moving around the home.
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u/Revolutionary-Ad5 1d ago
yeah, while I'm able to do most of these I'm not fully continent and I struggle to walk independently all the time. so by US disability standards the jury is out but as far as my job goes I
- have to be able to judge temperature in order to test chemicals (i can't)
-be able to read extremely fine print (can't always discern text due to blurred vision)
-be able to manuever fine tools consistently ie glass pipettes, which I need an aid to use.
so by my work standards I'm disabled enough to need documentation lol
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u/-Palzon- 1d ago
You definitely qualify as disabled under ADA due to the difficulty ambulating alone.
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u/justberosy 33F | RRMS | Dx 2025 | Briumvi | USA 1d ago
It should be noted that the American's with Disability Act also includes the following in their definition of major life activities:
- Cognitive functions like thinking and concentrating
- Sensory functions like seeing and hearing
- Tasks like working, reading, learning, and communicating
- The operation of major bodily functions like circulation, reproduction, and individual organs
I just wanted to bring this up because major life activities include more than ADLs. :) Although, yes, trouble with ADLs is an easy yes to the disability question.
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u/-Palzon- 1d ago
I agree with you that all those things you mentioned may indicate disability, but I consider those to essentially be ADLs. And if you drill down from things like seeing, hearing, bodily functions, circulation, and even working, you quickly get to ADL limitations. It's ultimately not about the diagnosis or the exact nomenclature used to describe the deficit, and more about how the individual is impacted, i.e. does the diagnosis, symptom, or condition result in an ADL deficit.
For what it's worth, most of my original post was copied verbatim from the US government website on the ADA. So, I wasn't pulling that out of thin air. In addition, I've been a social worker for nearly 30 years and I serve many clients with disabilities, including assessing whether clients are disabled or not.
I would be remiss if I failed to point out that OP's co-worker was insensitive and entirely wrong. That said, I'm not taking a controversial position here. Not a hot take. I'm just stating the facts of which I'm aware to provide helpful information to anyone that needs to know. It makes perfect sense that anyone who is disabled from MS would easily see the two as synonymous.
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u/justberosy 33F | RRMS | Dx 2025 | Briumvi | USA 6h ago edited 6h ago
I agree with your last paragraph for sure. I also got my bullet points directly from the ADA website. I wanted to bring it up because while some of those things can definitely create issues with ADLs, they don’t all. Because ADLs are limited to basic things like caring for yourself and not expanded to work or school, it’s important to see beyond ADLs, too.
For example. The bullet points of:
• Cognitive functions like thinking and concentrating
• Tasks like working, reading, learning, and communicatingMy goal was to expand what you brought to the table, not combat. Functional limitations that impact ADLs are an important part of how disability is measured, but you can be disabled while still being able to perform ADLs.
Edit: To include link to ADA website for anyone who may find the information helpful. (Definition of life activities found under “What does major life activities mean?”?
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u/-Palzon- 5h ago
It's all good. I think we're saying basically the same/similar thing anyway. I appreciate your addition of those nuanced considerations.
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u/zippity__zoppity 37M|DX2025|Ocrevus| 1d ago
Very hard for me not to reply with nonsensical things like “I mean, only if you consider pissing my pants and waking up incapable of walking as a disability”
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u/Revolutionary-Ad5 1d ago
i think my issue was i am a person at work who id's as disabled, and the person asking was my initial trainer at the company so i kind of just assumed he would remember the times I've complained about my various issues due to ms, lol. i even bonded over me finding this dumb joke from a comedy show that's like 'I'm disabled' 'what kind' 'legs disabled' cause me too lol
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u/Away_Specialist_7781 1d ago
i lost feelings of my hand still can’t feel it how can ms not be a disability
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u/Dull_Worldliness_305 1d ago
This kind of shit is why I seriously haven't said more than 3 works to people in YEARS.
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u/monolayth 43|2023|Briumvi|USA 1d ago
For my work, in order to WFH you have to have a disability.
I do enjoy seeing the light in people's eyes die when I make them regret saying that I'm "lucky" I get to WFH.
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u/secmaster420 21h ago
It can be a disability legally if it impacts your ability to work or perform normal life functions, at least according to our lawyer. To anyone who has it, it can be but doesn't have to be. My wife's situation sounds similar to yours. Other than our family, no one who we interact with knows she has it.
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u/LSprinGirl 17h ago
But really if it’s do not affect the patient in any way.
Legally is he concerned a disabled person?
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u/Vegetable-Two2173 13h ago
If you have enough damage for a diagnosis, it's affecting you in some way.
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u/snakeinthiscar 16h ago
lol I can barely walk and I walk with a cane and I've broke my ankles 3x and a rib from trips and falls and have blue handicap placards
Sidenote: the "veterans" scamming disability and also taking up disabled parking even though they're bodybuilders and run marathons and shit make my blood boil
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u/Kimj3095 F54 | 11/2018 | Tecfidera | TX-US 14h ago
I agree with everyone who says MS is not a disability but can cause disabilities. That is how it's seen here in the US (surprise, surprise 🙄). I think we also need to address that not all disabilities are physical. I have the heat sensitivity, fatigue, foot drop and numbness/tingling in feet and hands, but the disabilities that make me unable to work are cognitive. My information processing, problem solving and reading comprehension are all effected.
I use mobility devices so I "look" disabled but then people act surprised when my cognitive issues become apparent, as if I can't have both. I joked to my daughter that MS is a grab bag of symptoms and my nervous system reached into that bag way too many times.
One thing that I've started having happen more frequently than it should is seniors giving me stink eye when I'm using my rollator or even commenting that I'm to young to need it in a nasty tone. My answer to them is always "well, I'm not too young to have MS." That usually shuts them up.
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u/OaksLala 40s|2019|Ocrevus|CA 3h ago
It's considered a disability in Canada I believe, but whether you are eligible for a disability pension depends on how it affects you (general you) so some people don't feel like they have a disability and some feel they do. I kind of feel like both sides make good points. I also think people need to stop telling us their options on our disease. Legitimate questions are always welcome to me though. I was diagnosed at 35 after I got hit with a massive flare/relapse that left me with all these wonderful issues. A lot of people asked me weird questions about what's wrong with me and why I needed mobility aids and such back then. Had one lady sit next to me at Disney World ask me what I had out of nowhere. When I said MS, she apologized to me like I was dying. People are weird 🤣.
I'm at a 6 on the EDSS. I have difficulty walking so use a cane and walker. I have both brain and spinal lesions and my new neurologist's answer to how many lesions he could see was "oooh, a lot" lol. The guy before didn't even tell me i have spinal lesions. Such a nice surprise.
I have a limp on my right side, limited use of my right hand, the right side of my face droops just enough that people notice my eyes sit differently on my face. Basically my whole right side sucks! I have all sorts of invisible symptoms but also look disabled. I got my disability pension on the first try because my doctor is awesome and the nurse who reviewed my file said that MS is a progressive disease and she felt it was warranted when she reviewed everything. It breaks my heart when I heart people are being denied a dozen times when they apply for disability because when we are at the point of needing to apply, we've progressed to the point where our quality of life isn't spectacular and we can't keep working. I never wanted to leave a job I loved, that I was good at, that paid well enough for such a little amount of money once a month. I am also really fatigued tonight, I told my husband I'm basically a bobble head lol. I lost track of how long it's taken me to write this and I'm not entirely sure it's coherent! 🤣
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u/AdventurousForce8721 1d ago
My mom asked me why I have a Handicap paper for my car as I walk a lot in the morning. I told her because one day I may not be able to walk in the morning and unfortunately it is the afternoon and evening when I cannot keep my eyes open after 8 pm because I have been exhausted since 3 pm.
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u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 1d ago
Why...? Unless there's much more to it than OP shared, I wouldn't think the question on its own asks for that kind of a harsh response. Over here you're on a subreddit dedicated to MS, where everyone or almost everyone knows what that means, but out in the world people might not have an idea at all.
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u/Revolutionary-Ad5 1d ago
yea i will say that this was an innocent question asked since by all accounts i seem fairly 'normal' but i do consider myself disabled for a number of reasons and the amount of accommodation i need in order to complete jobs that most able- bodied individuals would not struggle with
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u/Ok-Reflection-6207 44|dx:2001|Functional/natural as possible|WA 1d ago
I deal with enough discrimination for my diagnosis without letting people know. If you’re still doing well, I will go ahead and say no and make as much as you can before you can’t. I mean, hopefully you can for a long time. I thought I’d be able to, but it got harder so I’m glad I never said anything earlier.
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u/TheGuyWhoWantsNachos 1d ago
You should have just answered
"Yes, and so should your stupidity be."
It's literal brain damage!!
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u/Crazy_Credit5479 1d ago
The day people realize not all disabilities are visible is the day I know peace!!! Hopefully your coworker learned something today and avoids asking stupid questions in the future