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Julie  Stachowiak, Ph.D.

Should you tell people at work you have MS?

By November 15, 2011

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I wish I had an answer for this question that fit every situation. I don't.

The reality is that everyone has a unique work environment. The office (or whatever setting you work in) "culture" may be such that telling people about your multiple sclerosis (MS) brings out the best in people, resulting in them rallying around you in a supportive and empathetic manner. However, it could also be that revealing a condition like MS that could result in your abilities being hampered occasionally by MS symptoms could make everyone fearful or even hostile, as they focus their concern on how this could affect them negatively.

Most of us probably work in a situation that is kind of a combo of the two scenarios above, with some people turning out to be saints, others showing an evil, selfish side, and most people falling somewhere in the middle - sympathetic and not wanting someone to endure hardships from MS, but also not really liking the idea that your diagnosis or symptoms might affect them in any way (like increasing their workload).

Therefore, we all need to take a hard look at workplace disclosure of MS status - we must think through the details of how, why, when and whom to tell about our MS. I've put together some thoughts in the article linked to below to get you started on your workplace disclosure strategy.

I'd like to hear from you on this. What are your thoughts about telling people you work with that you have MS? What has your experience been in the past? What do you wish you would have done differently? Share your stories in the comments section below.

Read the full article here: Disclosing Your Multiple Sclerosis in the Workplace

Comments
November 15, 2011 at 9:22 pm
(1) Bryan says:

It seriously depends on what kind of work you do, how much your MS impacts on your ability to do that job, and whether or not you have other skills your employer would be able to use in the advent your MS prevents your from being able to do your job with reasonable accommodations under the ADA.

Another consideration is if you’re still able to walk but are unsteady on your feet, someone who doesn’t know you have MS might think you’re under the influence of alcohol or a controlled substance.

November 16, 2011 at 8:33 am
(2) Colleen says:

I disclosed. It just seemed easier than keeping a secret. And what a secret. Reactions have been mixed. I work @ a school in an administrative office. NO ONE in my office EVER asks how I’m doing. Or suggests accommodations for me in situations that require more manual labor (setting up tables for events and stuff). However, OTHER people in the school are soooo supportive and helpful. Especially the athletic dept. staff. They get it and are always friendly and helpful and supportive.

Ultimately I don’t know if it was the “right” thing to do–to disclose. But I couldn’t keep that secret hanging over my head. And since I occassionally have balance and/or walking issues it’s best that they know than think I have other problems I’m not disclosing!

November 16, 2011 at 12:43 pm
(3) Pam says:

I disclosed to my team. We’re very close and keep very few secrets about our lives. (Three of us have worked together for close to 30 years.) So far, I have had few health problems since the initial symptom and diagnosis. But, the injections, appointments, and all other medical stuff has been the source of humor over the years. As far as my non-team members, some of them know, and others do not.

The only negative comment was from my old boss who, when we were having a lot of office environmental issues (mainly heat and allergens), refused to find another location in the department where I could temporarily work. In her words, “you can take your sick time or you can file for disability”. What a nice person! To my coworkers’ surprise, I did not file a workplace grievance against her. It was just ignorance on her part.

November 16, 2011 at 1:22 pm
(4) Jan says:

I was diagnosed rather late in life. I had symptoms since my 20′s. I decided not to disclose because I thought I could “get by” as usual. Also, it is a private matter and no one else’s business.

Unfortunately, I had a nasty relapse at work. You know how it is, loss of bladder function, speech difficulties, can’t walk, etc. I was alone in the office and I had to wait hours for a replacement. My son came for me because I couldn’t walk.

Everyone was polite but incredibly they brushed it off. One person actually said “oh, everybody has that”. Although I never had a sick day in 3 years, I was reprimanded for taking time for the MRI’s. After a short time, I was “let go”. I’m a sole-support widow and I really needed that job.

If I had to do it over, I’d disclose AFTER landing the job. Otherwise, there is just too much risk that people will think it isn’t important or an imaginary condition. Some people go out of their way to be mean. Maybe it is job competition and they use any advantage.

Thinking it over, I had clear and dramatic symptoms over the years and my DOCTORS brushed it off. Don’t expect more from your employers.

November 16, 2011 at 1:28 pm
(5) Jan says:

Other comments are very interesting. I wonder if my symptoms were as invisible as I thought. Did anyone think I was drugged or drunk sometimes?

November 16, 2011 at 2:46 pm
(6) Ken says:

My boss has been accomadating for my symptoms. All I have asked for is that the elevator be kept running. The one time it was out, they found another work station to work from. I keep a fan at my desk to keep cool, and so not to affect my co-workers.

November 16, 2011 at 4:17 pm
(7) Kathy says:

This is a tough decision. I decided to disclose because I am such an open book anyway, and have worked here longer than almost everyone but the owner and am kind of mom to the employees. But the same thing happening in my private life is happening at work. I am very positive and don’t complain a lot, but I think they see how tired I always am and try to “help.” Help means, “I didn’t want to bother you with this, or “We didn’t ask you about this because we are trying to help you out.” What has really happened is that I feel left out of my life. I have tried to let them know I am still the same person I was before my diagnosis, but I still feel like they treat me like a disease instead of a person with some challenges. And it became apparent over time that some people are threatened by anyone with an illness, because they are afraid and don’t want to understand, so they just avoid you. I have no apparent visible disabilites, but occasionally have short term memory problems, dizziness, and a lot of pain in my arms and neck and shoulders. The mention of the diagnosis DOES change your relationships, so proceed cautiously and with the other person’s personality in mind before telling. I would have never believed the reactions if I wasn’t living it.

November 16, 2011 at 11:44 pm
(8) Velma says:

i live in a very small town and county. everyone in the county pretty much knows everyone else so once someone knows something, everyone knows it. i have been totally open about my MS and have had such wonderful support. it has really been a benefit to me to have it known. people help me if/when i need it without even thinking about it but if i am handling it, they just let me. of course, i live around very wonderful people who are always helping those that need it so i have been blessed. when i get a job i let my employer know but then again, i have only worked here and they all know my work ethics, etc. so know that helps. a lot can be said for small communities.

November 18, 2011 at 11:58 am
(9) Jason says:

I am also from a small town and I worked at a rural hospital before HIPPA rules. I told my boss, but decided not to tell my co-workers. One night I had a seizure and was brought into the hospital by ambulance and spent the night in the emergency room. The next day I was talk of the hospital and everybody knew! I took it in stride and decided to tell everyone from that moment. Looking back I probably should have told peole sooner, but my problem was I didn’t “show” any signs. Now everybody knows and I dont’ have a problem discussing it.

November 16, 2011 at 11:56 pm
(10) Joan says:

I don’t really have a choice but to disclose, as it’s pretty obvious something’s going on, as I have gone in my seven-plus years at the college where I teach from walking unassisted to using a scooter to get arounnd campus. The work community and students have been supportive and helpful. I work full-time and am every bit as much an active faculty leader as anyone else on campus. My work environment likely is much more aware than many, so I’m grateful for that.

November 19, 2011 at 12:25 am
(11) bs says:

I don’t want to tell anyone i haven’t built trust with on a deep personal level. I am afraid of stigmatizing myself. Unfortunately i get wiped out sick from injections. I started falling behind at work and being late. I need to get my pace figured out, because i don’t want to be treated different.

Good luck

November 19, 2011 at 12:15 pm
(12) Stu says:

My disclosure cost me my job. Employer requests health information annually for workplace safety. After 27 years of exemplary ratings I suddenly couldn’t go a month without an infraction. Managers are taught how to cite those with disabilities for “performance ” without mention of health issues. ADA was toothless. While EEO said they felt I was being harrassed and discriminated against there was no proof it was because of my disability. In retrospect I should have just lied for three years until retirement.

November 21, 2011 at 8:33 pm
(13) murphy says:

Since disclosing my MS at work, things have never been the same again. In her opinion, I am now a liability where before she considered me an asset and my treatment from her confirms this. According to my experience, never disclose a chronic, serious condition to a boss. Fill out your FMLA paper work to protect yoursrlf and forge onward!

November 24, 2011 at 1:54 am
(14) MS WARRIOR says:

I AGREE! Disclosure is never a good thing. When your condition is known, managers are trained on how to get rid of you, while staying within the ADA laws!

November 25, 2011 at 9:49 pm
(15) Irene says:

I work in an academic community and am responsible for teaching, research, and writing. When I am compromised by relapses, it does not increase the work of my colleagues. After five years or so, when my condition worsened, I felt I had to inform my supervisor and the HR person, but only a very few co-workers. Fortunately, the effect has been positive, in that my administrators allow me to take a yoga class, excuse me from working events held at night and have extended other considerations to enable me to remain functional and productive. As others have observed, this decision really depends on your work role, conditions in the work place, and the attitude of supervisors. I’m dismayed to read the accounts of people who were punished for disclosing their condition.

January 25, 2012 at 1:44 am
(16) Gail says:

Disclosure must come with education to your superiors. Use the MS society website for brochures to present to your employer with a letter (sample on the site) describing the symptoms you want to deal with an accommodations request. I have had lots of struggles in deciding but I have never been sorry I disclosed. Also I had to understand that it is a continual process to educate and inform people. It is tricky to not sound like you are gathering pity! And superiors to not “make faces” when you are again giving a symptom scenario. This is our disease and we deal with it every single minute! The employer can have maybe an hour a week with it if at all! So I remember that when I need some type of accommodation. And people will help if you ask as a professional. My friends at work can be very supportive but I have to remember they seem not concerned about confidentiality. So friends at work need to stay work friends if you’re not disclosing all symptoms to your boss. Find good support from outside of work. And use your accommodations to the max no matter if you’re having a flare-up or not. I keep lots in reserve for when the flare-up comes. And many co-workers will always resent the “ease” I appear to have at my job. Once in a while when chatting at work about weekends, I will quickly share that my weekend was spent really resting and relaxing while my husband took on all the housework! Noting too though, that we had to cancel entertainment plans while I rested. And then of course I could be sure to repeat that to co-workers the very next weekend! Oh, our life with MS!

September 19, 2012 at 2:14 am
(17) Kelli says:

I told my boss after being diagnosed with optic neuritis and blind in one eye that they were certain it was MS and scheduled me to have an MRI. I was terrified and his response was, “Sorry to hear that. Just be aware that you need to keep your sales up ” (blink). I’m crying telling you what I was just told and you’re worried about my sales. Wow! I haven’t had a flair up in 4 yrs, was on a new job and told the girl in my office that I had a Dr. appt and that it might be MS flairing up. Ironically I was let go 2 days later. Now I dont know what to do because I am having a lot of pain, exhaustion and had rrouble walking the other day. I’m scared the flair up will get worse while on a new job but I need the insurance as well as a paycheck as I have a mortgage and bills like everyone else. Right now all I can do is sit up worrying and cry.

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