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Revealing MS to Your Employer

  • By jackie5275

    I’m hoping for some responses. I’m just curious to know how many folks notified their employers of their MS diagnosis. When did you notify them? Right away or as it started to affect you more? What was their response? If you haven’t notified them, why not?

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  • By Kim Dolce Moderator

    Hi jackie!

    I’m retired on SSDI now, but I worked for a few years after I was officially diagnosed in 2005. I never told my employers I had MS. That is a decision each person has to make according to their unique circumstances. For example, some people have had an extraordinarily good relationship with their managers and felt comfortable enough to risk disclosing it without fear of reprisals. Many of them are still employed. But as is so often the case, business culture is generally not a loyal or tolerant environment, most staffers are considered expendable. Businesses are savvy enough not to blatantly fire a worker because they have MS, they can easily get around discrimination by claiming the worker wasn’t fulfilling the requirements of her job. In an at will employment culture, it’s totally legal to do that.

    So be very cautious in your decision about whether to disclose. Personally I would discourage you from doing it unless you are pretty sure your job wouldn’t be in jeopardy. Good luck, I hope you can continue to work for many years to come.

    –Kim, moderator

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    • By jackie5275

      Kim,
      Thanks for the response. I wasn’t looking for help in a decision. I knew when first diagnosed as I still do today there is no way I would ever admit this at work. I was just wanting to know what the experience of others was. I guess I wanted to gauge how things were going in the world of work in general.
      Jackie

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    • By jackie5275

      Kim,
      Thanks for the response. I wasn’t looking for help in a decision. I knew when first diagnosed as I still do today there is no way I would ever admit this at work. I was just wanting to know what the experience of others was. I guess I wanted to gauge how things were going in the world of work in general.
      Jackie

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  • By LSU79

    I know this is a relatively old thread but I thought I would add my two cents.

    I told my employer right away. The response I got was more than I expected. If you ever need anything or if there is anything we can do to help just let us know.

    In time I needed some accommodations. I started coming into work 2 hours later and I have the flexibility to leave when I need. If I have a day where I can’t come in I just don’t come in. I have even gone to work when having a bad day and they sent me home. I have to say I have really been treated great.

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  • By anneflaherty

    I was perfectly upfront with my employer when I first started to see a neurologist, and when I went through all the testing, and got a diagnosis of Primary Progressive, his reaction was to sigh and say- “It’s so frustrating having to deal with everyone’s issues'” Not one trace of human compassion from a man I had worked for for 11 years, and HAD considered a friend. Within a month, he had carefully put together a list of reasons why he was cutting my hours and salary. I was stunned. It was not what I expected from him at all. I tried to initiate a conversation about reasonable accomodations several times, and he cut me off every time. Wish I had never disclosed.

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    • By jackie5275

      Hello Anneflaherty,
      I’m sorry & dismayed to hear about your experience. I’m also kind of surprised because it sounds to me like there was some kind of discrimination happening to you. Just on the surface, it sounds like an ADA violation to me. I don’t know if you’ve pursued any legal options about it, but you might want to look into it.
      Jackie

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  • By Christina Mattoni-Brashear Moderator

    Hi Anneflaherty,

    Thank you for sharing your story and being part of our community. I’m so sorry for the experience you had with your employer, especially when you had considered him to be a friend. I thought you might find this article has some helpful resources:

    https://multiplesclerosis.net/living-with-ms/help-for-the-disabled-looking-for-work/

    Wishing you the best! Please stop back and let us know how you’re doing.

    Take care,
    -Christina (Multiplesclerosis.net Team)

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  • By Gryphon

    I told my employer at the interview that I had MS. He looked suprised about it but said as long as I can still do my job it’s not a problem, and If I can’t work full time he can schedual me for part time. I work night shift at a hotel 5 nights a week, very easy job except for the boredom.

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  • By Erin Rush Moderator

    I am glad your employer is accommodating, Gryphon. It *is* the law and I am glad your employer seems to understand that. I hope you are able to continue working (despite the boredom), for as long as you would like! Thanks for sharing your employment story with us! Best, Erin, MutlipleSclerosis.net Team Member.

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  • By Tsebitah

    i told the President of My Board of Directors he told me not to tell anyone. I didnt want to have to live with a lie and I consider witholding lying. Besides that I just trusted and loved everyone I worked with. 1 month later the Board had a meeting and asked me to attend they asked me if I could do my job. I told them Yes and continued to work another 4 years without problems. Then after eleven years of a successful career and achieving the company multiple benefits; I was asked to come into the office after my first day back from Christmas Vacation for a meeting. I was met by the Chairman, Vice Chair, Secretary and Attorney, they let me go and then told my staff that the MS was just slowing me down but I was a fantastic employee. I still am hurt and feel betrayed, they wouldnt even discuss accomodations. Needless to say I filed a lawsuit and won. Now I know Dont tell your employer if you have a job you want to keep. I loved my job and it was part of my identity. I still feel at a loss and am on Disability. UGH

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  • By Erin Rush Moderator

    I am so sorry you went through this, 1mcy347. But, I am so glad you fought for your rights and did not let them get away with this blatant discrimination. I am sorry you were forced to give up a job that meant so much to you and I do hope you are able to find other things to fill the void that this loss has left. Thank you very much for sharing your experience with the community. Thank you, Erin, MultipleSclerosis.net Team Member.

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  • By flynace67

    I just lost my job in August and their only reason was ‘performance’. I went to work every day and tried to do the best job I could. I think they were just tired of dealing with my MS, which they were aware of. They gave me a nice severance pay and promised that my unemployment would definitely be approved, but they wanted me to sign a disclaimer meaning I couldn’t sue them. I had to because I needed the money. Sighhh… Now, I need to find another job and I am having trouble trying to find one I can do because MS is still causing some issues. Wish there was a list of MS friendly jobs out there, lol.

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  • By DonnaFA Moderator

    Hi Flynace67. I’m sorry to hear that your employer was not supportive. Have you checked with NMSS? Their Resources & Support page has both resources for financial assistance as well as employment. You also may want to connect with an MS Navigator to see if they can also help in your search.

    We’re sending good wishes for much luck. Thanks for being part of the community, we’re glad you’re here. -All Best, Donna (MultipleSclerosis.net team)

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  • By AMAMS

    My first thought is “don’t do it”.

    We live in a world that expects if you are physically at work then you are well enough to do the work. Most people have no idea what you are coping with, they don’t want to know. The assumption is that they are bullet proof and that nothing bad will ever come their or their loved one’s way and as such what you are going through would not happen to them – it happens to others right?

    Sounds cold and harsh however the laws we have for health and safety dictate that we should all be that way or shuffle off somewhere and not be a nuisance to others – and yes that’s what most of us want too, to carry on our lives without this thing.

    In our case that is not so and so we need to protect ourselves. So I’d say, tell as few as possible cause they don’t want to know, as an employer they then have to act in some way and the only one baring the brunt of the fall out is ourselves.

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  • By Grant1270

    Hey everyone,

    I explained to my boss when I was first diagnosed. He was really good with it. He had told me that his ex-wife was diagnosed many years ago and he understands what happens. I’ve never had a problem and he is very supportive of me. On a down side, he’s looking to retire in a few months. I don’t think I will be as open with his replacement, whoever that may be.

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    • By Erin Rush Moderator

      Grant1270, thanks so much for sharing your experience with us! I am glad your boss was so understanding and educated on MS! I do hope you have a good experience with his replacement, and I don’t blame you for being cautious until you can get a “lay of the land” with the new boss. Thanks again for sharing! Best, Erin, MultipleSclerosis.net Team Member.

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  • By Erin Rush Moderator

    Thanks for sharing your experiences here, cherylanne! And thanks for your very apt and funny description of brain fog! I love your insight! Best, Erin, MultipleSclerosis.net Team Member.

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