This Is MS Multiple Sclerosis Community: Knowledge & Support

Hello, I am new here. Diagnoised Feb, 07. Definately not enjoying this monster. I have went from extremely active to having a hard time walking. I am really struggling with telling people about this disease. I work with mostly men and I dont want them to treat me like I am sick, however it is becoming noticeable. Does any one have advise?

i wish i could help but i am in such a different situation - working here and there, diff ppl, plus mine is not noticeable any more. or whatever ppl would notice they would not necessarily ascribe to illness and certainly not to ms. sounds tough though. one thing that did catch me off guard a bit at work recently was, i was taking a course to get certified for level 2 ski instructor and one of my fellow instructors (older guy, i'm 37 female) ratted me out about ms to the examiners. i passed anyway but it made me all the more paranoid and freaked out during the course. in the end it was another case of all those things you worry about, not happening! but every other day of the year my work crew treats me like average joe. hopefully someone else has some more sage wisdom to impart!

it is a tough call and i think it ends up being different for each person...my co workers know about mine...the reason i took the job i have now is cause of being tired all the time and walking with a limp ect ect...here i sit more during the day so i am okay and dont get as tired..thank god...but i told them so they understand when i come in here and cant think straight. they help me out a great deal here ...but ever work place it different...so you have to bring that into the thought process. it all comes down to what you want to tell them and how much you want to tell them...i hope that helps a little...

chris

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waiting for answers

I suppose it just depends on whether you want people to know you have MS. Once you tell coworkers you can assume the world will find out...no more secrets :p

Personally, it was a relief to me to tell my officeworkers (I work in a big office...about 25 employees under me) and not have to "hide" my problems. I did keep it a secret for a year or two, but I had to come to work for 3 days with an IV port for steroids in my arm and I figured that was a good time to tell people. They were wondering why I had the big wrapping of gauze on my forearem anyhow

I appreciate the advise. I have had such a tough go of it these last two months i think i just realized there was no curing me. I decided after my diagnoises that I was not going to tell any one, now Ive reached a point that I may need a little help. Its hard to find a way to bring the subject up. Everyone has so many questions.

well this is a wonderful spot to get the support you need to help get thru all the tough times..trust me these guys are great on here...any question they can help....

chris

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waiting for answers

It is not a club you really want to be in but it is probably a good thing that you found us here. There are a lot of great folks with lots of wisdom and great advice. I may not fit into that category too well but here is my 2 cents anyway... I work for an agency in the US and my job requires a good amount of physical work. I am at the point where I may no longer be able to continue my current position. I did tell some close coworkers and my immediate supervisor when I was 1st DX in 2002. I chose to do so knowing that it may haunt me, but also knowing that I would have to explain things and withoout the disclosure I would have to tell tall tales. I guess it all depends on your situation. My agency is filled with people who know a lot about medical conditions and pharmaceuticals, etc so they have been really good about it. not too many crazy questions and a lot of understanding. When and if I get to the point where I can not fill my position description that may all change. If you are going to ask for a "reasonable accomodation" from an employer then you will certainly need to disclose.
Good luck and welcome to the site. ---Grump---

Hi Lgooch
welcome! It is hard to bring it up in the workplace. Some jobs I said nothing (until I'd a relapse), others I said it when I started.

I found that the more open and matter-of-fact I was about it, the easier people accepted it.

The one job where I was a bit defensive and worried about it - that was the time that a co-worker used my unease about it against me in a bullying way and it became very uncomfortable.

Two articles online really helped me:

7 habits for regaining power in the workplace with chronic illness
http://www.acceleratedcure.org/download ... llness.pdf

and
Working with MS: your guide to navigating the workplace in a healthy way
http://www.acceleratedcure.org/download ... withms.pdf

In my current job my boss is VERY supportive. She even went on a course to understand MS better - the cyncial side of me wondered if she was trying to catch me out but the nicer side of me was really grateful she took the time to try to understand.

Hope it goes well and don't ever apologise or be ashamed for having this illness or needing an accomodation to be made. Good luck.

Hi Lgooch,

I work for myself, but under a big company name. I have people from that large company that I have to report to. I had an all day meeting once during a time that I walked like I was drunk, and couldn't stand without teetering. I left the meeting and called my direct report to tell him what was wrong with me. It seemed better to tell him than for him to think I had a newfound drinking or drug problem. My impairment was obvoius.
That was two years ago, and them knowing has caused no problem that I know of.
If it does, there is a lawyer down the street.......

Terry

Thank you all for your replies. I have enjoyed viewing this site. Im glad I finally joined.
Lisa

Just remember you can't control how people will react.

I told my staff because I am pretty tired all the time and its obvious I am not acting my normal self. Not noticeable symptoms yet.

Good luck.

I am a teacher and needed days to go to the dr. so I told my principle what I was being tested for. After, I told her that it came back negative. I feel bad for lying because she was so supportive but I dont want to lose my insurance! In schools they dont fire you for MS, that would be a huge law suit but they very often find legal ways to wedge someone out. I am a good teacher, liked by the teachers and good friends with my principle but you never know. My insurance is going to be very important to me in the future.

As far as telling others, I would love to be able to and who knows, later I may have to. I would love to be able to go on disability but dont want to be disabled! lol

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Life is hard, buy a helmet.....

If your job is not jeopardized by telling you may find support and help you never imagined. A very good friend of mine is a teacher and has used his MS to enlightened and raise student and community awareness. The other side of that is what I fell into. I am a building contractor and with the exception of a few loyal friend/clients my phone no longer rings. Granted I have been unable to work much of the past 2 years but in good times it would be nice to have the option. This question seems as individual as MS itself.
Lars

I guess it's all individual choice. It isn't easy though.

I recently have had a relapse that has affected my mobility and I am forced to walkwith a stick and wear a leg brace. People keep asking me what has happened. Either (if i don't know / trust them) I say 'oh sometimes my leg doesn't do waht it's supposed to' or I just say outright 'I have MS'. On the whole people seem keen to move the conversation on which is fine for me!

I did tell my manager etc when I got dx though and they have been great for giving me time for appointments and stuff.

So I haven't made an announcement and most people seem to have just accepted the stick and general air of drunkennewss without question.

Good luck with whatever you decide though.

If you are wobbly you can use a stick. You can just have it leant in the corner, just to prove you are not drunk. Do use a stick if you tend to trip, you can really hurt yourself and your MS will have a relapse.

I don't tell strangers, as a rule, that I have MS. They think "wheelchair" and I am not that far yet, nor intending to be.

I can say, I have a rare nerve problem, my left side doesn't work properly. That keeps most people happy. And if they really want to know, I can say "encephalomyelitis disseminata, a disease of the central nervous system, in which the white blood cells attack the myelin sheaths of the nerves...". Their eyes glaze over, that is quite enough.

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Bibo ergo sum