Should I tell people that I have MS

[Tomjadg]

I think depending on the situation, you need to do what is best for you.

I am obviously disabled using a cane and walking poorly, so everyone at work knows, and helps out whenever they can. They offer to get me food when there is catering brought in. It is sympathy, not pity.

I pick and choose who gets details. Some get "I'm doing ok") but others get details if they ask and are truely interested.

I skip family get togethers because I really don't want to play "50 questions" over and over with relatives I only see once a year.

I understand those who don't want people at work to know if they are not visably handicapped, since it can affect their work position. I am lucky that I don't deal with that.

I never bring up my problems unless I am asked, but I have no problem discussing it if I have to.

Do what works best for you.

[Vlad]

I don't have any terribly-noticable outward symptoms yet. The short-term memory loss I can write off as being an "airhead", and on the balance issues I can pass as just being a klutz. I can sit on the left side of a room, so my bad ear and bad eye aren't towards anyone. So it's really up to me who I disclose to or not.

My wife obviously knows, and my kids, but I haven't told my grandkids. My parents and sisters know.

In a work situation it's a little different. I've told one of my three bosses, one or two co-workers, and two of my twelve employees.

I feel like I'm putting a burden on everyone I tell. And it's not one of those happy smiley things where you share your burden with others and it makes it easier on you. I'm a stubborn *** of a man, and I make it very clear that people can't start treating me differently.

When people get the news, the overwhelming reaction is that they want to help. They want to take on some of my duties, or help me out with little tasks. The way I figure, eventually I'm going to need a lot of help from people. I don't want to get to that point any sooner than I absolutely have to.

I realize it's not really fair for me to drop the "I have MS" bomb on people and then not let them deal with the news in their own way... so that's why I try not to tell anyone unless I have to.

[justacowgirl]

3 years ago i asked the same question on this forum. I do tell but it took me awhile to get comfortable about my MS to talk about it. I have never had anyone be thoughtless or cruel to me about my MS.

I think people need to know about the disease; there is alot I can personally do to make people aware. I wear a NMSS mobility wrist band right now and so does my husband.

You will figure out what is right for you.

J

[MSer102]

I was diagnosed with MS in September and have been on medication since then. I have told a few people other than family but I wonder if it is something i should hide because I do not want people feeling sorry for me. People tend to feel sorry for someone when they do not understand the disease.

Should you tell? Nooooooooooooooooooooooooo!

And I think it doesn't have anything to do with people feeling sorry for you. After reading forums for many many years I think its because once you tell people you'll get an expectation that they'll somehow know all about MS and know just the right thing to say and if they don't you'll start blaming them for NOT knowing all about MS and NOT knowing just the right thing to say. And then you might start posting on MS forums about how stupid they are. I see it all the time on MS forums and I'm frankly shocked at how self-absorbed MS makes some people. That sounds pretty harsh but nobody with MS is more important than anybody else. Everybody has a story and for some reason some people with MS start to lose their perspective and think that their story is more important than somebody else's.

I've seen too many times that some people with MS start to think that everybody else's life is supposed to change just because they told them that they have MS. That's SO bad for your mental health! There's a really good chance that people will NOT feel sorry for you and if they do it will be based on wrong assumptions. And then you might find yourself wanting to blame them for being wrong. You might not think that you'll do that but I see it happen over and over. I made the mistake of thinking that way and I was kind of surprised me that I did.

A lot of it depends on WHY you want to tell other people you have MS. If your expecting that they'll know what your talking about and feel sorry for you I'm not sure that's true. It think its much worse to expect that someone will understand or feel sorry for you. If not then why do you want to tell them? Other people are probably not going to understand and it isn't their job to understand just like you probably don't understand other peoples' conditions. After all we're only human.

I think its a common opinion that you should NOT tell people at work that you have MS because they don't understand MS and they'll rely more on their imaginations and will start to think that you can't do your job. I think its safe to think that anything you say can and will be used against you. So it might be better to not say anything at work until you want to ask for reasonable accommodations in order to keep your job. Otherwise I think an old saying from World War I is true: loose lips sink ships. You can sink your own job or relationships if you "share" too early or with the wrong expectations.

Even in your personal life with your friends and family I think that once you tell then Ieveryone else is as entitled to their opinion about what you said as you were to say it in the first place. I found out the hard way that my opinion isn't more important than other people's opinions about what I said. I hate to think of you finding out the hard way too! Once you tell you have no control over what happens because of it so you can't really be surprised or shocked by anything.

My life got a whole lot better when I stopped saying things and stopped having expectations about how other people are supposed to act. I have no control over anybody else. I can only control myself. And you can only control yourself. Once you do something you have to expect that there will be consequences or you should think twice about doing or saying it in the first place. I think that that's just the way life is.

[justacowgirl]

You know; I have to say again that I have never had anyone treat me differently because I tell them I have MS. It interests me that people have such negative experiences.

MS does not define who I am.

J