How do people treat you knowing you have MS?

[ladybug162]

I don’t tell a lot of people that I have MS. Only my family and a couple close friends know and I regret telling one of those people whom I thought was a friend.

At my previous job I got really close to one of my co-workers. We both started working there the same time and ended up becoming best friends. Anyway, eventually my work started to suffer because I wasn’t able to complete the work load I was required to do. Basically, I wasn’t working fast enough and wasn’t meeting my quota.

This girl whom I thought was my friend started questioning me about it and saying things like “the supervisors are really keeping tabs on us and watching to see if we are meeting our quota and I notice you are struggling to keep up. Is there anything I can do to help you with this?”

I felt bad because I had no idea until this point that people were noticing I wasn’t keeping up. I also felt like I knew her well enough that I could tell her. I told her to please keep it between us though as no one else knew, especially our supervisors. She gave me her word so I told her I had MS. Granted, I wasn’t even sure that me not being able to keep up with my work load had anything to do with MS. Anyway, her response was not what I had expected. She basically said “I’m sorry you have MS, but you knew you had it before taking this job. You knew what you were getting into and it’s not fair to us (meaning her and the other co-workers) that we have to pick up your slack and take on extra work because you can’t keep up.”

I was so floored I didn’t know what to say. I had no idea how MS was going to affect me and did not know how difficult this job would be for me. I also found out the next day that she told another one of our co-workers which really upset me. She has been cold towards me ever since and no longer talks to me.

I’ve noticed my family treats me different too. Like the other day I was around some of my extended family and my mother was talking to her sister. She made the comment that there was only two of us kids left to get married, my cousin and younger brother. I never got brought up in the conversation. On one hand I’m relieved because I’m not being hounded about finding someone and settling down like they used to do before I was diagnosed. However, on the other hand it makes me feel kind of worthless. Like they no longer expect me to find someone because of this disease....as if I’m damaged now and no one would want me.

Also it seems like every decision I make I’m reminded of this disease. My mother, even though I know she means well and is only trying to help me....she constantly reminds me saying things like “well you need to think about how your ms is going to affect you before you do this or make that decision,” or “what are you going to do when your father and I are gone? Who is going to be there to help and take care of you?” I understand that I need to think about these things. It’s just that at 35, it’s not something I want on my mind everyday. I’m still fully functional even though I know something could happen any day. Even if I don’t think of it, my mom is right there to remind me. Always asking what am I going to do? Well I guess I’d go into an assisted living facility or something.

It’s just little things like these which make me feel different. Like I’m not treated equally because I have a disease. I feel like I can’t live a normal life without constant reminders that I am different. It’s just yet another reason why I don’t tell people I have MS. The less they know the better.

So I was just curious if you guys got treated any differently by people who know your diagnosis?

[loopey]

I guess I am very fortunate. After my dx my dh took on more household duties that were difficult for me because of my constant dizziness. My son sees me several times a week and takes me out so I get some walking in. He moved closer to me so he could help.

I still get a lot of unsolicited advice from other people but it has slowed down. The one thing that bothered me was an acquaintance asked my dh if the doctor had told me how long I have left to live!

[Jules A]

I don't tell anyone at work to protect myself from extra scrutiny like you experienced. That sucks and I'm sorry the person you thought was your friend turned out to be so rude.

Family wise we are opposite although either way sucks. My family pretends I have nothing wrong with me. I'm the one constantly worrying about saving enough money in the event my health hits the crapper. They ask me why I'm always exhausted. I feel like saying: "duh cause I work 50 hours a week and have freaking MS". I kind of expected my parents to have offered assistance in the event I ever need it but nope.

It is disheartening to have to think things about things like this at your age but in a way consider it a possible heads up which gives you more time to prepare. Hang in there.

[ladybug162]

Thanks for the replies. I can definitely relate to both of you.

I think thus far, family has been the worst even though I know their intentions were good. I’ve heard everything from being told I need to start planning for my death to being given advice on the foods I should eat or vitamins I should take that have been proven to help with ms because they have read such and such article or because so and so from church has a friend whose daughter has ms and she swears by this diet or that vitamin. While I know I need to be thinking about these things and I appreciate the advice, everyone is different. What works for one may not work for another.

It’s like they want to help, but at the same time I hear hurtful comments from them. Like sometimes on the weekends when I’m in so much pain or just so exhausted that all I want to do is stay in bed, they’ll say things like “you sometimes just have to push yourself” or “you are just being lazy.” It hurts so bad to hear these things and makes me wonder if feeling this way and being so exhausted is normal and that maybe I am just being lazy? Am I just using ms as an excuse like they are implying?

It just all makes me feel so hurt, guilty and frustrated.

[MMMMS]

I honestly think that many don't believe me. The extra scrutiny is about looking for evidence of MS, I think. When I tell someone, they act like I'm making it up. They ask probing questions, like they'll find out I don't have it. So stupid. 😆

A close friend replies "Well, I.., too." and repeats whatever MS-related thing I mention. It's dismissive.

The "friend" who attacked you is all about herself. If she's been cold to you since, she's saving you the time and bother of telling her to take a flying leap.

Family is fine.

Supervisors have no idea what MS is and won't be bothered to find out. They won't understand your being able most of time but not other times. They will see your able times as proof that you are able and faking (or carelessness, laziness) at other times.
I couldn't get it through a boss's thick skull that fatigue takes over in the afternoon. They think that MS fatigue and their afternoon slump is the same thing -as they ride off to an event and we crawl home to sit and recover so we can make it in the next day. 🙂

People don't understand what they haven't experienced, so when we say MS fatigue, they relate it to normal tiredness, the only experience they've had. When you talk about being exhausted, they relate it to that time they fell asleep on the couch. When you talk about memory/focusing problems, they'll say that they can't remember where they put the keys, either, because that's the only level of memory problem they can understand.

They will never get it. But it's not our job to school up every numbskull who feels like being dismissive or mean.

Maybe we should start responding in kind, though...

MS: I was so exhausted after work last night that I went to be in my clothes, without supper, and slept for 12 hours. I'm still tired this morning.

Ms Dismissive: I'm tired after work too, you know.

MS: Well, this isn't the first time I've ever been tired, and I do know the difference between that and this. Did you think that I had never experienced your mild kind of tired before? (Keep eye contact as if you expect an answer. &#128578

[trevvian]

Aside from my family, not that many people know I have MS. I try to keep it private, because I think it's the kind of thing where most people don't understand [I]why[I] I would want to keep it private, and would mention it to others with no ill-intent. They don't understand the ramifications of MS becoming as compared to, say, having the flu becoming public.

But by and large, I have found that among those who know, the MS just acts as a magnifier of how people are anyway. The type of people who always want to problem solve offer advice, the type who think everything revolves around them compare my symptoms to theirs, the type of people who deal with life matter-of-factly just deal with it. Those who like to gossip ask lots of qustions. The friends who hold me accountable call me on my BS and my pity parties. My brother who always wants to protect me, gets sad when he can't. My mom tries to mother me.

The very precious few who know me well, know when to (and when not to) make jokes about it. Not many non-MSers know when it's ok to use "on steriods" in a punchline, but I have one friend I swear I should keep a journal of her jokes, because they are always funny in a groan sort of way, and never dismissive.

I think the way people react says more about them than about me or my MS. That's one reason I don't tell people at work. I can't control the types of people I work with, and I don't want to have to deal with the varying reactions.

[Seasha]

It’s like they want to help, but at the same time I hear hurtful comments from them. Like sometimes on the weekends when I’m in so much pain or just so exhausted that all I want to do is stay in bed, they’ll say things like “you sometimes just have to push yourself” or “you are just being lazy.” It hurts so bad to hear these things and makes me wonder if feeling this way and being so exhausted is normal and that maybe I am just being lazy? Am I just using ms as an excuse like they are implying?

It just all makes me feel so hurt, guilty and frustrated.

I'm so sorry you are meeting this kind of opinions, ladybug. I also believe that no one truly understands what it's like to have MS except for those who live it. It hurts when I hear people report that they hear "you are just being lazy". You should read this article called "But You Don't Look Sick" a spoon theory written by Christine Miserandino, who has lupus. Replace lupus with MS and you get the same theory. https://butyoudontlooksick.com/artic...-spoon-theory/

Print this out and share with your family/friends. Hopefully, they will get the picture!
Hang in there my friend.

[Temagami]

The Australian MS Society web page has great explanations of MS- look at the tab under "About MS" and then the "symptoms" tab. They also offer a color pamphlet for explaining MS to young adults which would also be suitable for adults.

[MMMMS]

" I have found that among those who know, the MS just acts as a magnifier of how people are anyway."

That says it best.

[MMMMS]

That's an excellent site. Thank you.

The Australian MS Society web page has great explanations of MS- look at the tab under "About MS" and then the "symptoms" tab. They also offer a color pamphlet for explaining MS to young adults which would also be suitable for adults.