July 8, 2015
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?
Kim Dolce Moderator
July 10, 2015
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.
September 3, 2015
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.
March 4, 2021
Your story is very similar to yours. Currently approaching medical retirement.
I hope you progress in the manner you have asked for.
January 8, 2016
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.
February 18, 2016
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.
February 27, 2016
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.
Christina Mattoni-Brashear Moderator
February 20, 2016
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:
Wishing you the best! Please stop back and let us know how you're doing.
-Christina (Multiplesclerosis.net Team)