Should I tell people that I have MS

[clay_07]

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.

[hunterd]

I told as many people as I could when I was diagnosed. With that being said, this is a very personal decision. The way I looked at things was that if people did not understand the disease, it was a reason to explain things to them. There was much pity, but I would tell people that MS was not the end of the world and to please treat me the way they always had.

[HETA78]

Disclosure is a HUGE decision and one that only you can make for yourself. I was dx in December and it's still not easy for me to say without tearing up. However, when I run into people I know, and they say "what's up? how and where have you been", I feel awkward if I don't tell them but on the other hand, I don't want to tell them if I can't sit down and have a full conversation.

I am public with it at work and with my closest friends and most of my family. However, my biological father doesn't know, neither does my grandmother. I'm public with it on Twitter not public on Facebook...

So...do what feels right to you. For the most part, I have found that my group of friends are so compassionate, so loving and understanding, I can't imagine them not knowing. The more I get envolved the more I want to just come out to everyone with it so I can share information.

[Seasha]

As others have said, it's a very personal and huge decision to make. Do you happen to get the Momentum Magazine put out by the NMSS? In the most recent issue there is an article called "The Disclosure Dilemna" starting on page 18. It offers suggestions for disclosing to family and friends, for dating and at work (and knowing your rights)

Here is a link to read online. You'll have to use the built-in magnifier to read it though and click the arrow at the top to turn the pages.
http://publications.nationalmssociet...mmer_2013#pg19

Hopefully this will work and you get some good suggestions!

[MSW1963]

I believe some care should be taken when deciding who to disclose to or not. Some people can be very judgemental, critical, and sometimes down right cruel.

It can be particularly true early in the dx, before a disability is obvious. You may be familiar with the expression 'but you look so good' when said 'not in a good way', with the intention of being critical and mean spirited.

Good luck with your decision.

[aitch10]

I tell everybody, but then I'm a blabber mouth. It's such a personal decision.

[Jules A]

I also told everyone in the first couple of months after diagnosis thinking if I told enough people someone would know the source for how to best treat this horrible disease...yeah right, snort.

After that I told no one. Most of my close family know and a handful of close long time friends but that is it. I definitely won't disclose at work until it can no longer be hidden.

The looks of pity really bummed me out.

[onlyairfare]

Short answer: No.

Longer answer: Pity is the least of it. Most people will use your diagnosis against you by ignoring you, isolating you, declining to recommend you or promote you at work, or otherwise discounting your worth now that you are "a cripple."

I told my husband, my mother and my aunt, my other treating physicians, my kids when they were old enough to "need to know," (teenagers) and perhaps 8 or 10 friends over the past 30 years. I work in a competitive field and cannot afford to be perceived as a liability.

[4boysmom]

I told everyone, and have never tried to keep it hidden. My co-workers laugh with me when I bump into the wall. They make sure they get me up from my computer a couple of times a day to walk a mile around a track by our office.

They even ordered me up a special parking sign so I always had the closest spot by the door in the winter. They were afraid I'd tumble.

I think most people are compassionate, and will try to help others out. It isn't a look of pity, but of "hey, we all have crap that we have to deal with, so let's do it together!"

Now if I was always whining about "poor me", they might get a little tired of it. But I laugh with them when I say the wrong word, try my best to be positive, and all is well!

But that is just my personality! I'm an open book about everything. I'm known for my ability to make a "short story long"!

[Thinkimjob]

There is the problem of what to tell them at work. I don't know what your anti-discrimination laws are like over there.

In Australia, employers have a get-out-of-jail free card, in that you can't be sacked for having a disability UNLESS making adjustments to your work conditions would cause your employer "undue hardship".

I didn't have to make the decision - small town. Everyone knows what color underwear you washed yesterday. And they'll talk about it until something more interesting comes along.

As for the rest - it's up to you. I'd say get it over with. It is hard for people to deal with visible disabilities, but at least most of them try. Diseases they can't see and don't know much about confuse them even more.

Don't think of it as pity. Think of it as sympathy. I know what the look that crosses my face when someone tells me they've got cancer must look like. It looks like pity, but it's really just, "I'm so sorry this has happened to you."

[lisa1014]

My husband encouraged me not to tell because he didn't want people feeling sorry for me and/or him.

I let that go on about a year then I started telling people. It was such a huge relief to let people know what is going on and why I have acting differently!

It was like the truth will set you free! I feel so much better now that my friends know! I also took it upon myself to tell my husband's best friend because they go on trips together and during the last one I had a relapse while they were gone and Mark was moody and miserable during the trip and they couldn't figure out why! Once they were back and my relapse was over I shared with him and he was very understanding and I do think it helps now for Mark to have someone he can share his frustrations with if he needs to.

It is a personal decision everyone needs to make but if you were feeling like me like you are telling a lot of fibs and stuff to talk around the situation I felt much better telling and now even my employees know! It makes it much easier now that they know why I am missing work or maybe not doing as much on certain days!

[lstrl]

When I was first diagnosed, I told my immediate family and some of my closest friends. Unfortunately, word travels though and some of my other family members found out because my grandmother kept blabbing that I was sick. I get the feeling everyone I used to work with knows because, once one person knows something, everyone does, and I did tell one when I was explaining why I was looking for a job in another field when asking to use them as a reference.

If I had to do it all over again, I wouldn't have told as many people. It's obvious they're uncomfortable with it, and I don't understand why because I very rarely mention anything about it. From now on though, I'll only tell people if I have to. Lucky for me, my disability is very minimal and nobody would ever know something is wrong with me by looking at me. I'm definitely going to keep it that way unless things get worse again and it becomes obvious that something is wrong with me.

[Cat Mom]

I won't chime in with my opinion as there are so many good arguments for both sides of a very personal decision but a couple months ago I saw Meridith Viera and her hubby on Dr. Oz where he spoke of when he started telling people that he has MS. A neighbour (I think), upon hearing the news said something like, "Thank God, I thought you were a drunk!".
Jen

[onlyairfare]

I should acknowledge that I am "lucky" that I have essentially no visible disability, just a little bit of right leg weakness and foot drop. As my job is largely sedentary, nobody knows that I have a history of ON, fatigue and bladder issues. I can confidently say I don't have any cognitive issues, as I have intermittent neuropsych evaluations since my (totally unrelated to MS) brain tumor surgery, all showing I am fine cognitively.

If I were visibly disabled, especially if I were stumbling and appearing drunk, well then I would need to say something about my diagnosis. ThinkImJob, laws are similar here in the US. Under ADA (Americans with Disabilities Act), employers have to make "reasonable accommodations" for employees with disabilities; they are not allowed to fire you just because you are disabled. But "reasonable" can vary, depending on how expensive the change is and how large the company is.

That said, subtle discrimination such as not giving you the best accounts/clients or failing to promote you because of your disability, can be quite common.

[Jules A]

Don't think of it as pity. Think of it as sympathy. I know what the look that crosses my face when someone tells me they've got cancer must look like. It looks like pity, but it's really just, "I'm so sorry this has happened to you."

Wise words and I think you are correct it is more about sympathy than pity but it still doesn't feel good.

I've always been obnoxiously tough and independent so feeling vulnerable makes me uncomfortable even with family and friends.