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!

Comments

View Comments (5)
  • alchemie
    4 years ago

    Most of my co-workers know that I have MS cause I’ve told them. The ones that don’t are ones who are new employees who don’t know me personally. I was eventually able to get reasonable accommodations shortly after being diagnosed, like being able to work at home & lots of breaks. I had to go part-time instead of full-time 3 years after diagnosis though due to symptoms & relapses. However, I’m still trying to “stick it out” and remain employed because I find it quite fulfilling & if I don’t work, I get bored way too easily. Anyway, its really up to the person as to whether or not they want to disclose their condition but I’m telling you – the A.D.A. (Americans with Disabilities Act) has worked great for me.

  • Maureen Krystyniak
    4 years ago

    The day I left work myself and a couple other people knew I left early because something was wrong. I was off of work for a week and a half. Some people thought I had a stroke as did I. When I came back only 3 people knew,of course they found out the true story while I was gone. People could tell something was wrong,but I never told any body. The owner of the store demanded to know. The office woman told him. Which I thought was wrong. Thankfully him and his wife accepted it. 3 years. later about 3 more know. Its hard for me but i take one day at a time.

  • ThisBSMS
    4 years ago

    That was me in that first comment ststing that I had it for 8 years & I don’t plan to disclose. As honest as I want to be, I need to be a double agent because I can’t afford to lose my job & to have it impact my career. I came very close to releaving especially after a couple of episodes when I needed to be out of the office. I think if I disclose, I might lose my job. I can’t even work from home 1 day when I don’t feel well. One is expected to be alert, healthy & on top of their game. And no one cares. As much as ppl can be compassionate, it is only to a degree. You need to be present. Expected to perform. That is it. The weakest lose! So, I play my role & I smile through pain & tears & I do my job. I don’t have much choice. This is life. 🙁

  • Angie W.
    4 years ago

    Had I not told my employer what was going on, I would have missed out on being connected with the best MS specialist in my area. My boss happens to know some “high up” people who were able to get me in with my doctor, who was no longer accepting new patients at the time. Telling my employer was the best thing I ever did! Also, it is my personality type to be very open with a stranger on the street…so it was never even a question in my mind. I do realize though, that in other positions, it might not have been the same situation, and I might have kept it under wraps if I knew it might mean keeping my job or not.

  • Dory
    4 years ago

    My employer when I first found out I did inform about what was going on. I didn’t have a choice I felt as I had gotten a call on my way to the office and even though the doctor didn’t say it,I knew at that point so I was pretty distraught when I came in. However, they were great and so were my colleagues. My next employer, I didn’t tell and am thankful as someone else I knew was forced to retire early when they found out they had a chronic disease. I am on my third employer and they will not be informed until I have no other choice. I know they can’t discriminate but they may find other things to use instead that didn’t matter. It has been harder as I have had some illnesses, fatigue, issues with heat, and a case of Bell’s Palsy all since May. However, I won’t tell them till necessary. They are a business and even though I don’t feel it would come from my direct supervisor, I don’t know what they may be told to do. So I have struggled with this as I am a very open person. Have to be careful with my posts on social media and when I forgot and say I went to a medical seminar over the weekend and people inquire about what and I tell them, I just explain I have a close relative with the disease. I also feel a bit like a double agent. Just be careful out there!

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