wheel chair bound?: Dear fellow MS people... - My MSAA Community

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wheel chair bound?

Sandydemop profile image
54 Replies

Dear fellow MS people,

the other day a colleague wrote me a lovely recommendation until the part where he said "she'll probably soon be wheelchair bound." Wow. i was mostly sad thinking he may be right but it was insensitive, ignorant and inappropriate. What do you think? thanks

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Sandydemop profile image
Sandydemop
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54 Replies
jimeka profile image
jimeka

I agree, was that comment really necessary? People can be so insensitive. Sorry it happened to you, it’s a good job you have broad shoulders , I think anyone with ms has to have broad shoulders, people speak without thinking, which by then, it’s too late. Stay strong 🤗💜💐🍫

BlanketTime1 profile image
BlanketTime1

i think that was inappropriate. it reminds me of one of my sister's favourite sayings, 'i love going out with you. we get the best parking spaces.' really??🤬🙄 way to be insensitive.

hopeandgrace profile image
hopeandgrace

Sorry to hear. In all seriousness, consider telling your HR dept. I have trouble walking and take Ampyra (now the generic kind) too. If any of my coworkers said that, I have no issue reporting it. You don’t deserve those snide comments. Hang in there!

Sandydemop profile image
Sandydemop in reply tohopeandgrace

hopeandgrace thanks for your support and validation of my feelings. I think he meant it in a supportive way and probably didn't mean for me to ever see it. but still...awful. I wonder if i should say something to him? I wasn't planning to.

mrsmike9 profile image
mrsmike9 in reply toSandydemop

Perhaps saying something to him directly would be the way to go, if you think he didn't mean to be insensitive. It would be a learning experience for him. Give him a chance to apologize and see it from your point of view.

Sandydemop profile image
Sandydemop in reply tomrsmike9

thanks mrsmike9

hopeandgrace profile image
hopeandgrace

Ahh … I didn’t know if he knew you would see the recommendation or not … that is tricky, then. You know him better than me! I am sure that in some crazy way that phrase could have been said out of concern and in a better tone than how I read it.

lbenmaor profile image
lbenmaor

Sandy,I agree with you. That was so insensitive , rude and wrong!

Leslie

Mollyabigail profile image
Mollyabigail

I agree. That was very insensitive. I am sorry that happened.

Sandydemop profile image
Sandydemop

thanks you guys :) Mollyabigail lbenmaor BlanketTime1 jimeka would you suggest speaking to him about it? what would you say?

BlanketTime1 profile image
BlanketTime1 in reply toSandydemop

CV97 thanks for contributing. i've never been in this position, don't know how you get on normally, how comfortable you feel &etc.

Sandydemop profile image
Sandydemop in reply toBlanketTime1

Thanks I’m not big into confrontation. Except my husband 😀

CV97 profile image
CV97

IF you decide to speak with him, I would be sure to let him know that it's not his place to inform others about your supposed future wheelchair status. That is private information and inappropriate for someone to put in a recommendation letter to somebody else, even when they're trying to be helpful.

Sandydemop profile image
Sandydemop in reply toCV97

I like how you put that. Not judging. In my letter for the scholarship I put that I have MS and that it keeps me from working full time. No details. It wasn’t relevant

CV97 profile image
CV97 in reply toSandydemop

I personally only have experience with my husband initially telling everyone we knew when I was first diagnosed, even though I didn't want that information shared then (really still don't, if I want people to know, I will tell them)

I was frustrated and chatting with a coworker whose wife had passed away from cancer several years before. He recounted a story where someone in the small town had spread her diagnosis before they could even get a chance to talk to their insurance broker about the coverage they had in place. They walked into the office found out they already knew all about it!

Much the same as your situation, it was presumptuous of the person who shared her news to think it was their place to be the bearer of private info. Once diagnosed with something chronic or catastrophic, our ability to choose swiftly gets taken away. You should have the right to choose who gets to know those more intimate details.

The person who wrote your recommendation probably thought it would convey how beneficial it would be to recieve the scholarship. Go easy on them, but remind them that the specifics of your condition are your story to share when you think it's appropriate.

Sandydemop profile image
Sandydemop in reply toCV97

Thanks CV97 He overstepped for sure and yes, the details of how i live/walk or don't walk are intimate. I also agree with you about personal information. If you don't tell somebody about you and they already know, it's just gossip. If i want someone to know something about me, I tell them myself.

gracy225 profile image
gracy225

"WOW" doesn't come close to describing how ignorant this person is. How dare he make such an assumption! As one having MS too, I'm horrified. As you can most likely tell, lol, this issue is a "hot button" for me. MS is difficult enough. I don't know if you feel as I do but a wheelchair is one of my worst fears. Even if this man was trying to be kind, he still had absolutely no right to say those words. Only God knows what our future holds, and this person, certainly is not God, not even close.

Sandydemop profile image
Sandydemop in reply togracy225

One of mine too

Jer29-11 profile image
Jer29-11

Omg, no! And honestly, how does he even know?! Completely insensitive and inappropriate. I’d have a conversation with him. It actually may give you a better understanding of what he meant and why he said that. Also, I’m so sorry!

Sandydemop profile image
Sandydemop in reply toJer29-11

I don’t know if I’m brave enough to ask him what he meant by putting that in the letter. And thanks for understanding my feelings around this issue. One reason I appreciate this group. You all get it.

Jer29-11 profile image
Jer29-11 in reply toSandydemop

It’s such a hard thing to do! I’m not very shy or fear confrontation, but it can be hard for me sometimes as well. What I meant to say too was that he may not have intended to be hurtful, so talking may help clarify. I know we’ve all had our share of people saying hurtful and inappropriate comments, so we understand. I hope what he wrote can be reconciled between you! Stay strong friend ❤️

Sandydemop profile image
Sandydemop in reply toJer29-11

thanks Jer29-11 for your support. You all give me courage. this is my opportunity to practice speaking up for myself. Next time it happens (and it will), I'll know what to do.

StacyHayward profile image
StacyHayward

Something to consider. What was written was inconsiderate, but haven’t we all done, said or written stupid things we regret?? I wouldn’t judge too harshly. Maybe give him the benefit of the doubt. Likely he knows little of the disease and didn’t know it was a hurtful phrase.

Maybe having MS so long has given me a thick skin. Even when someone says something dumb and it is hurtful, I try to move beyond it and laugh and educate. Otherwise I’m wasting energy being upset.

Good luck. I hope the two of you can get a better understanding. I’m sorry he wrote a hurtful message. You’re right that it was insensitive and inappropriate. Hang in there!!

As far as what I would say to him, I would tell him his words were hurtful and then educate him about MS. Particularly that not everyone ends up in a wheelchair. And if they do, it could take years! Then ask him not to make assumption about where your MS journey will take you.

StacyHayward profile image
StacyHayward in reply toStacyHayward

Please don’t read my comment as implying you don’t have thick skin or your feelings aren’t correct!! It’s simply my own personal experience! I think your question was great and something we all have to think about in many settings!! Sometimes people say the dumbest things!

Sandydemop profile image
Sandydemop in reply toStacyHayward

Hey Stacy, you were right, i don't have thick skin. I was hurt! but i'm thinking outside people just don't get how hurtful that statement could be. It was an assumption. A big assumption and for all i know he could be right. Next year this time I could be writing this from a chair but it was not his claim to make.

StacyHayward profile image
StacyHayward in reply toSandydemop

I’m so sorry. I hope you prove him wrong!!! Keep up the fight. You are an incredible person!!

Sandydemop profile image
Sandydemop in reply toStacyHayward

thanks Stacy. so far so good. I appreciate your faith in me.

goatgal profile image
goatgal

It would be difficult to do, but he needs to know how ignorant he is and what an awful statement he made. If you can't face him (I wouldn't be able to), you need a trusted friend to do it for you. What he wrote was more than insensitive: it was demeaning, cruel, and deeply hurtful...AND would be professionally damaging to you if seen by a prospective employer. What was he thinking???

Sandydemop profile image
Sandydemop in reply togoatgal

what was he thinking? maybe he wanted them to feel pity?

Sandydemop profile image
Sandydemop in reply togoatgal

Having said all this yes, i have to admit to saying stupid, insensitive things to others in the past, before I knew it was hurtful. thanks. you have given me a lot to think about.

goatgal profile image
goatgal in reply toSandydemop

Empathy seems preferable to pity. Pity has a very unsavory whiff of superiority. But either is inappropriate in the letter you describe. If the subject is your employment ability, that should be it.

palomino27 profile image
palomino27

Horribly wrong!

Sandydemop profile image
Sandydemop in reply topalomino27

thanks palomino27 he was wrong. I think so many people don't know how to address disability. I suppose it makes them very uncomfortable.

palomino27 profile image
palomino27 in reply topalomino27

They are judgemental fools.If I ran a company now I would hire only people with chronic conditions and wheelchairs and such. Because we have to do things in the most efficient way possible to conserve energy so we can even attempt to live life.

Would destroy the competition....

Sandydemop profile image
Sandydemop in reply topalomino27

I like your thinking palomino27

Elizt3 profile image
Elizt3

He felt a need to forewarn the recipient of the letter of one aspect of your possible future function? This seems wrong on so many levels. I’m sorry this happened to you. I can’t imagine how I would feel if someone did something like this to me.

Sandydemop profile image
Sandydemop in reply toElizt3

thanks Elizt3

pamgarner profile image
pamgarner

some people are just insensitive bores!

Sandydemop profile image
Sandydemop in reply topamgarner

thanks pamgarner Is it my job to educate him? Hmmm.

mrsmike9 profile image
mrsmike9

That's pretty rude to make such assumptions! From being on this site and knowing so many who do use mobility items I, personally, feel more comfortable about that thought should it come my way. But I, and probably most of us, don't want others to make assumptions it will happen! We work hard to stay as mobile as we can!

Sandydemop profile image
Sandydemop in reply tomrsmike9

we do work hard to stay as mobile as we can, don't we!

MsBoo profile image
MsBoo

Inappropriate I would say.. he is assuming something that might not happen. And on a recommendation to that.. build you up to someone and then blow you out of the water because of what he thinks will happen.. I am 64, and NOT in a wheelchair.. I may be having problems but I would stand up (even holding something to do so) and would give him a piece of my mind...... sorry, it just irks me......

Sandydemop profile image
Sandydemop in reply toMsBoo

Thanks very much. What you’re saying is validating. I hope never to get to that stage. I have to focus more energy on exercise if I don’t want it to happen

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

This is just wrong on so many levels 😔 was he gunning for the same job? Cause he just lost it.. the good news for you is, the new position can't decide on a what if... And well, let me take care of Mr wheelchair bound!😐😂🤗Sandydemop I was told 25 yrs ago that I would be in a wheelchair within 3 years. Keep doing what you can to stay out of it! 🤗💕🌠

Sandydemop profile image
Sandydemop in reply toJesmcd2

Ugh! Makes me mad somebody said that to you! And it wasn’t a recommendation for a job. It was for a scholarship. Either way my ability to walk or not walk is outside of his realm. Thanks

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply toSandydemop

It was the Dr who did my 2nd back surgery 🤣 I was like I don't have time for that! But we shall see!🤣 And yes, it is definitely outside of his realm! Pretty sure no one can predict tomorrow!🤗💕🌠

falalalala profile image
falalalala

Presumptuous.

People say the craziest things. If it's meant maliciously, then I'd have a problem.

Either way, you end up learning something about them.

Sandydemop profile image
Sandydemop

falalalala Yes, i am learning a lot about how i am seen and what is related to stigma. Did you ever hear the term "ableist? It means able centered or able-priviledged. Like where i went today, they had a ramp in the bottom part outside and two steps to get into the building at the top of the hill. so many things, almost everything is made for people who don't use wheels.

falalalala profile image
falalalala in reply toSandydemop

I haven't heard that term but I have met people with that attitude.

I knew someone that once referred to me as a "cripple".

ᴵ ᵗᵒˡᵈ ʰᵉʳ ᵗʰᵃᵗ ᴵ ʰᵃᵈ ᵐʸ ᵒʷⁿ ˢᵖᵉᶜᶦᵃˡ ⁿᵃᵐᵉ ᶠᵒʳ ʰᵉʳ ʷʰᶦᶜʰ ᴵ ʷᵒⁿ'ᵗ ʳᵉᵛᵉᵃˡ ʰᵉʳᵉ ˢʰᵉ ᵃᶜᵗᵘᵃˡˡʸ ᵃˢᵏᵉᵈ ᵗᵒ ʰᵉᵃʳ ᶦᵗ & ᴵ ᵒᵇˡᶦᵍᵉᵈ ᴸᴼᴸ

This was a few years back.

I recently heard that she got Guillain-Barré after getting vaccinated and is having trouble walking.

I wonder if she learned anything from that experience?

The thing that blows me away is that some people think that they are invincible & that only other people have tough medical issues.......until they get one.

Sandydemop profile image
Sandydemop in reply tofalalalala

you are so right!

Sandydemop profile image
Sandydemop in reply tofalalalala

I like your response

falalalala profile image
falalalala in reply toSandydemop

Thanks

:)

agate profile image
agate

The person had no business making such a prediction, which is totally inaccurate. Not everyone with MS ever needs a wheelchair, and those who do often aren't "wheelchair-bound." It would be very hard to be truly wheelchair-bound anyway, wouldn't it? Everyone who uses a wheelchair that I have known moves out of it in order to get into bed, for instance. I really dislike that term "wheelchair-bound."

But aside from that, the remark was hurtful and destructive. Nobody can predict what MS will do.

Sandydemop profile image
Sandydemop in reply toagate

absolutely 100% correct. My sister says her wheel chair gives her freedom. I heard about a new wheel chair called Grit for all terrains. sand, dirt, etc. called the Grit freedom model. it's all how you look at it, right?

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