Do you tell people that you have MS?

[boogiesmom]

I've never kept it a secret, despite the fact that nobody would ever know just by looking. I have a handicap tag (due to pain & fatigue), so that, of course, requires some explanation. I was working for neurologists when I was diagnosed, so it was no problem at all sharing with them. Nobody has ever treated me differently once they knew...after reading some of these posts, I'm feeling very thankful!

[deannay]

No more hiding

For years I did not tell people, with the exception of my closest friends and family. Mainly because I was employed. When I did finally tell an employer they would start pulling back on my assignments and I was in fact passed over for jobs I was well qualified for. It really was awful. Now I no longer work, so I've come out of the closet, so to speak. Honestly it feels much better. Like anything you hide or lie about it can feel like it's something to be ashamed of. I am not ashamed that I have M.S. I am proud of myself for hanging in there as long as I have. Actually I'm amazed. I'm also relieved to let that all go. I'm 51 and I am secondary progressive. I have good days and bad and I just have to take each day as it comes. I do what I can, and when I can't I catch up on movies or books, depending on my ability to focus on reading that day. I no longer beat myself up for taking too many days off work. It is what it is.

[mamasam]

When I was first diagnosed, I told a few very close friends, my mother in law, my aunt, and my sister. My mother doesn't know. Of course my son and husband know. I had to tell my immediate co-workers because I was missing work in the beginning. The support was overwhelming. One of my friends and I were diagnosed within three weeks of each other and we have really helped each other.

I do not make it a point of telling anyone now. To look at me, you would think there is not a darned thing wrong. I look, walk, talk, and act fine. The truth is I am often suffering from numbness and some days couldn't think straight for anything. My symptoms are invisible.

Unless something terrible happens, I won't be telling anyone. It is simply not their business.

[aisunnen]

Adds to stress!

I'm not in the labor market any more (almost 70!), so I really feel for those who experience job difficulties, it must add to the unhealthy stress of MS. I was already retired when symptoms cropped up, but I was actually relieved when I had a dx, because MS isn't fatal, as a rule. I walk with a cane for balance and have an odd gait, so I get the "what happened?" also, but I don't mind saying I have a chronic problem with walking. I actually wrote about it in my college Alumnae News, and as a result I heard from one woman who has retired completely from a social life, which is really a shame. And I'd imagine that others who read that were curious to know more about MS, which is a great thing, in my mind. My family and friends are respectful and supportive; as for those who run for the hills, they must have their own problems, and I have to accept that, too.

[bjrnewlife2013]

Tell or not to tell that is the ?

I told my boss. There is only him and me in the office. He has his own afflictions. Whoever is better healthwise on a certain day picks up the slack for the other. He has even educated himself on MS and has a good understanding of why I do certain things. I don't trip over my own feet because I'm drunk!!. I'd prefer people know I have MS than think I'm intoxicated. I figure everyone has something they are going through. The big ones for me are MS and Fibromyalgia.

[coral63]

Great thread! So many wonderful replies!

I was dx in 2002 and in the beginning I told everyone about it. I lived in a victim mentality in those early years and was looking for attention. I felt sorry for myself quite a bit then and felt downright angry. Gratefully, I have taken steps to move into personal growth and have come out with a new perspective.

Today I only share information when it feels appropriate. A few times my sharing has inspired other people and I feel a deep sense of love for having shared.

[iluvpink]

When I was first diagnosed I didn't tell anyone. Now I tell everyone. I think people need to be educated that having MS doesn't mean you are incapable of doing anything.

I'm a special ed teacher of kindergarten, 1st and 2nd graders, so I haven't told them. They will sometimes ask when my leg will get better but they don't care. People could learn a lot about acceptance from children. I am taking more time off from work this year and have had to ask for accommodations, so I'm glad I told my principal a few years ago so it didn't come as a shock. I'm lucky to have a supportive principal.

The only problem is now that I'm having more problems walking, people want to do everything for me but I figure that at least they care. I know people gossip about it behind my back but they'd find something else to gossip about so who cares. If they don't want anything to do with me because I have MS that's their problem. At least I know who my friends are.

[vhmnoles]

No, then yes.

I don't work any longer but yes, I told my employer. I was fortunate, I was hired just after my diagnosis and felt it was only fair. Initially I only told very close friends and family. I was trying to come to terms with it all. But it's very obvious now that something's not right so, what's the point in trying to keep it some awful secret?

[Tawanda]

I agree with all who said something along the lines of we should not have to shamefully hide our condition or what a huge stress it is keeping MS a secret. I do not work outside the home, and thankfully I have never had to hide the big pink elephant in the room, but I think Amyrising's post illustrates how coming "out" to your employer can come back to haunt you. Is it fair? HECK NO!

Some of us here have to pick our poison (unless you are the boss) do you pick the stress of keeping your MS to yourself or pick the stress of having no job and trying to get by on SSDI? After struggling on SSDI for several years, if staying employed meant keeping my health a private matter, I would do it for as long as possible.

[HobbitHead]

Wow. I never expected this many replies!

I guess that I am still on the fence. I see the validity of both sides of the argument.

In a way I feel like people will look at me and treat me different if they know I have MS. And once that cat is out of the bag, there is no way to put him back in.

In another way it seems silly to have to hide something which I shouldn't be ashamed of. It would make it a lot easier to explain to people why I don't work.

But either way it is nice knowing that I am not alone in my decision to keep it to myself for now. Here I was thinking that I was the only one.

[Ri88]

I tell if asked about my walking (limps suck ) or my tremors. I feel that maybe someone will think whenever they hear about MS, they will recall meeting a person that has it and they were just like the rest of us. I dislike being treated like I don't have the same dreams as every other women

[Jules A]

Great thread! So many wonderful replies!

I was dx in 2002 and in the beginning I told everyone about it. I lived in a victim mentality in those early years and was looking for attention. I felt sorry for myself quite a bit then and felt downright angry. Gratefully, I have taken steps to move into personal growth and have come out with a new perspective.

Excellent insight, thank you for sharing your story of growth with us.

[venice]

In an ideal world, we would not have to hide our illness. It would not be cause for gossip among family members, "friends" and work colleagues. My experience is that this ideal world doesn't exist. There may be exceptions, as some of these posts have proved, and they are wonderful to read, but from what I can see these are just that: exceptions.

I told one close friend. When I did, I told her that I wasn't telling anyone else (apart from my family). I am certain that she told a couple of our mutual friends. I am sure this was done in sympathy, but it nonetheless betrayed a trust. She also seems to be fading away ... though maybe I am just more sensitive now, and nothing of the sort is happening.

At work, no way. I have no confidence that I would be treated the same, or that my position would be secure, despite having a boss that values my work. Moreover, I don't want my staff or colleagues talking about me, analyzing my behaviour and mood, even if sympathetically. It's just yuck.

I accept that when my MS progresses I will likely have to disclose, and I plan to be strategic about it, making sure I have all my little ducks lined up just so, to make sure I get the best accommodation, benefits, etc. that I can do.

[J-Bo]

As with being gay, I don't go out of my way to tell people at work, but I'm pretty sure most of them figure it out all on their own. If they don't see that something's going on, it's because they don't want to.

But in both cases, if asked, I refuse to provide them with a cover story. They don't get to make me do that.

[90stangg]

I've always have been open about it. I did have a problem at work. I worked at Ford on a assembly line. Had carpel tunnel surgery about the the same time as dx. Everything that happen after, they always tried to blame it on ms. Thankfully I got my 30 years in and retired.