To Share or Not to Share: Community Thoughts on Disclosing MS at Work

Making the decision to disclose your condition to your employer and/or colleagues is a difficult one, and can be associated with both intended and unintended consequences. Some people, like Christie, live life as a “double agent,” keeping her MS private while at work. Others, however, choose to be an open book when it comes to having MS. We recently featured a story from our expert and patient advocate, Steve, about telling people at work that he has MS. Several of our Facebook community members shared their thoughts with us, and as you can see, there is a great deal of diversity in their experiences.

Here’s what our community had to say:

I don’t think it’s a good idea to tell my employer

  • No way I am telling. I had this diagnosis for 8 years now and no one knew at work and I had different jobs. I will make up things when I am sick, I will say it is a ‘neurological condition’ at most, but never MS.
  • I would never tell an employer or future employer I have MS. I have been fired for revealing such a thing and almost all employers are loath to hire someone with any disease that will raise their insurance premiums.

I regret telling my employer

  • My advice: NEVER reveal to an employer unless ABSOLUTELY unavoidable.
  • My employer was not /is not very caring. And to my horror a select few coworkers went out of their way to make it harder for me.
  • When I was diagnosed, even with HIPAA, word got around my work (ICU) really fast. That was disappointing. I took a week off to deal with everything, and when I came back, my boss called me in. She told me I could not handle this kind of workload, and that I "needed to" look for another job.
  • I wish I had never told. Be careful.
  • I told my employer and they were acted like “and what do you want me to do?”
  • I disclosed my condition and was pushed hard out the door then denied long-term disability benefits through the employer. I hired an attorney and eventually won.
  • Amazingly I went from a reliable and efficient employee to someone who "had to go..." in the 24 hours I was admitted for Solumedrol infusions. Absolutely despicable.

I’m happy I told my employer

  • My boss is fantastic as well. Unfortunately I cannot do what I used to do, but he is always asking me if I need anything and if I do, just ask.
  • I'm blessed that my employer treats me great. I couldn’t ask for a better boss. He has worked with me the whole time.
  • I lucked out and my employer has been great. Thank god I work in an amazing hospital I find it harder to tell people on dates then it was when my work found out!
  • I'm glad I came "out." My coworkers are super respectful and I found out my boss' wife has MS also.

Have you shared your condition with your employer? What was your experience? What advice would you give someone with MS (or any other chronic condition) regarding disclosing this information to an employer? Please share your thoughts with us in the comments!

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