Do you tell people that you have MS?

[HobbitHead]

I just read a post from "reasonable" in the tell us about yourself section.

They said that "The best advice I heard was don't ever tell your employer and friends about your MS; only family."

I am one of those who has done my best to keep it a secret; in fact only some of my family knows.

Just wondering what everyone's perspective is on this?

[from2344]

For myself I am a very open person to begin with. However, I have kept it from some of my clients.

I have had no problem telling my family and educating them all as well (weather they liked it or not lol). But it's a different story telling my clients. I run a preschool from my home and I have a fear that they will think I am sick or diseased and this isn't the place for their children.

However, I do have long time client that I shared with and found out her Grandma also had ms and I learned a lot from her about the disease and as well as another person that had lived with it for many years. I was glad to have opened up to her but now there are times where she will tell me to go get some rest or I need a day off and I take offense to it and then wish I would have never shared.

I personally am not ashamed of my disease but often wonder if others know will they put a stereotype on me that I don't want. So, ya I do share but mainly with my family and friends

[MSer102]

I believe in not saying anything to anyone. As soon as you tell one person, you've lost control of the information and its spread. The more people you tell, the more people they tell and the more out of control the entire situation gets.

One of the sad things I've noticed about some other folks with MS is that they think "sharing" is going to bring only the things they want it to bring. And then they get overtaken by expectations of what other people "owe" them for having shared. Then it becomes, "I can't believe they said that. How could they say that? Don't they get it?" It's not really anyone else's responsibility to get it, just like we don't get other people's lives. And then for them, that leads to a downward spiral of "woe is me" thinking that never would have started if they had not been so "open".

So I believe in keeping my own expectations realistic and healthy and not saying anything to anyone.

[MrsBones]

I do tell people. It's not like I just blurt it out to everyone I meet, but I do tell folks as it comes up. Some I just give basics, others get more detail.

I did tell my employer at the time. I worked for the police and while I didn't deal directly with anyone who'd been arrested, my desk was directly across from interrogation and anyone who had been questioned had to pass me. Given my impairments bearing down like a freight train, I had to disclose them. I could have been a danger to myself and others if there was a dust up with one of the arrested.

I did disclose that it was MS. A few of the officers had relatives or spouses with MS, so they were already familiar with the ups and downs. There was no problem with taking time for IVSM or adjusting to meds. The chief would even send me home early when the building was too hot. They put one of those portable floor AC units near my desk.

I was very lucky with work. Many people aren't so lucky with employers, so it may be a good policy to keep what you can to yourself at the workplace. That said, family and friends all know. I see no reason to hide it. If people are going to be jerks about it, I didn't need them around. They'd only find something else to be jerks about, anyway.

[piper]

I am in opposition to others so far on this. I have told family, friends and my employer.

I have received nothing but love, caring and understanding. My employer and management are wonderful, supportive people. I am not sorry at all for having shared my journey.

However, had I been diagnosed years ago with a previous employer, I would not have shared anything. They look for reasons to fire people who are liabilities. So I understand that not every employer and management is like my current one.

God has blessed me with wonderful, supporting people. I wish everyone could have my experience.

[tracibk]

I didn't tell anyone outside family until recently because my legs don't work like they use to.

[limppy]

I'm not for telling

I personally told my employer that my symptoms were effecting my work and I was imediatley removed and told to go on disability... SO BE READY if you tell for the consiquensces ... I would only tell close family and very close friends that 's all that need to know as I found out there is no going back!!!

[Jules A]

I don't tell anyone. Only very close friends and family know. I'm mostly concerned about scrutiny and discrimination at work.

[Thinkimjob]

It's on a need to know basis, with "new" people. Do I need to them to know? Do I need their assistance? Is it worth the occasional well-meaning sympathetic discussion about their Aunt Beryl who had that and she got better, no wait that wasn't MS, that was mumps.
Sometimes.

I had no chance of keeping this under my hat. Small town, people know everything.

[pennstater]

I told family and friends. I also told a few trusted colleagues at work. They never spread it around and went by my lead.

I eventually disclosed at work when I needed an accommodation to work from home sometimes. I told my team as a few of them thought I was getting preferential treatment. So I told them and reassured them that I would still contribute my fair share, that the entire time I worked with them, I had MS andcto treat me as they always have. I asked them to please keep my confidence and not spread it around, to think how they would feel in my shoes. To this day, noone has spread it.

I know the support I had was unusual. You need to judge your relationships and determine why you would want that person to know.

[hunterd]

I think that when you tell one person, they will tell the world. So I told everyone, family, friends, colleagues. I also do not like to keep secrets, if you only tell a few people you need to remember who you told, so if you tell everyone you don't need to remember who you told.

[Tawanda]

I don't work, so I am "out" as needed. I do agree about keeping MS under your hat in the workplace if you can...unless you have an exceptional employment situation.

[Thinkimjob]

There's a good line in Blackadder Goes Forth, about a "top secret military plan". No-one must know. The General has told his wife, his wife's tennis partners and so on.
"So it's just between you and the rest of the English-speaking world, then?"

If two people know, that's one too many. No-one can help telling just one more person and saying, "Promise you won't tell anyone."

Actually these days, (and I know our employment laws are way different down here), I'm kind of proud of the way I'm handling MS.

[misslux]

No, need to know basis only. Family, close friends, and two business associates. Oh, and other people in medical settings and on paratransit.

I am clearly disabled (cane, rollator or transport chair) so when people ask "oh, what happened?" (which they often do -- rude, I know), I just say, "accident" and leave it at that.

[lstrl]

I told my immediate family and a few of my friends, but of course that spread to the whole family and I know one of my friends told other people. Had I known what I do now, I never would have told any friends, aside from maybe my best friend. She's the only one who doesn't act like I have some really contagious disease and still talks to me.