News for the Multiple Sclerosis Community

Did you come out at work about your MS?

I did and I am glad I did
50% (261 votes)
I did and I wish I hadn't
11% (60 votes)
I didn't and it seems fine
17% (89 votes)
I didn't and it is stressful
7% (36 votes)
I did not work when I had MS
4% (21 votes)
Other (please leave comment)
11% (57 votes)
Total votes: 524
I told my boss. Felt that if I did not it would become apparent & lacking an explanation from me my superiors would assume I was hitting the bottle on the job. I am a warehouse manager. The regrets stem from the questions that I get from people that I do not work with on a daily basis. People who work out of the corporate office seem to be full of questions, while those that I work with regularly are very supportive. If I could go back & start over, I would have told my boss & requested that if he needed to share the info with anyone that they keep it to themselves.
I had just transferred to a new job in 2000 after moving to a new home and about a year or so into the job, I started to experience some progression and experiened the gait issues as well. I had never come forward about the MS at my other job and was hoping to not have to at this one but I was sure that I could not continue the way I was without there being lots of questions. Well this is the same time that I discovered the LDN and started taking it. My doctor gave me a shot of Decadron that seems to alleviate the attack and allowed me to start walking a bit more normal. I've been on the LDN for almost 4 years now and hey, it's still my secret and I hope to never have to "come out"..lol.
I was walking like a drunken sailor all the time. Since I was in a very public job, it had to come out to stop the rumors. 2 years after diagnosis I was in a wheelchair. 8 years later I retired on medical disability. So I had to come out & for the most part it was accepted without too much stress.
Two days after I was diagnsosed one of my ccworkers asked what was wrong, so I told her and told everyone. I was a supervisor and expected to help out when busy. After several years it took me 2 hours to do 29 minutes of work. At that point I decided I needed a 100% desk job. I found one the next day. The new company new I had MS they bought me vice recogintion for my computer. Unforinately aftyer two years I had to go on SSDI. So yes I'm glad I kept eveything up front.
I told them at the place I worked when I was diagnosed and they were all supportive. Then the division was sold to another company and I didn't tell the new bosses as there was not much going on at the time. Then I quit and went back to work for the first company, and they changed things around with harsh glaring lights that were too hard on my ON eyes, so I told the new boss. He then bent over backwards to make accomodations, but I was was let go in a company-wide 25% reduction 6 months later. Then I realized what a precarious situation I was in, but luckily found a job within a month just before a long industry slump period. I didn't tell for 4 years, but finally did because cognitive problems were becoming worse. That quieted down, but has started back up again and I am worried as performance reviews are next month. The boss knows, and I would hate to go on disability, but it's getting harder and harder to do the job. If I hadn' t told, they might just let me go thinking I'm not trying, so maybe it's better that I did tell. But I'm scared and stressed out and getting more depressed and that's not helping. Any suggestions?
I have a very stressful job (CIO - state agency) but have always been able to manage many irons in the fire. I still do, but the process is exhausting. I often wonder how much longer I'll be able to keep this up. I do know that the "likability factor" is a major hidden component in performance reviews, and this has always worked in my favor. I'm always looking at jobs that I could do, if I can't keep up the big multitasking thing over time. I try to look at my abilities realistically and figure that I can still be employable at a fairly high level. If I were you, I would explain (matter of factly) but not apologize for my limitations.
I was Dx 6/21/05 and started a new job 7/1/05. Geesh!!! Talk about stress. But I came out in August when I decided to do the MS Challenge Walk to "get over myself". So I came out to colleagues to beg for support. I work in healthcare so I also thought that if these people can't " deal with it" then shame on THEM! I guess that could have been naive but everyone took it fine though since I was glowingly fit and healthy at the time I don't think they really "got it". Also it was a relief not to feel like I had to conceal such an important issue in my life since I am naturally a very "open" person. And in October when I was out most of the month with a flare, I was really glad it wasn't the first anyone knew about it.
When first diagnosed at age 27ish, I did tell people. I was at a confident, adventurous age and it wasn't obvious. Friends and family were sympathetic and admired my independence. That strengthened me. I started my own business. My sister and father started working for me. When I turned age 40, the MS reared it's ugly head. I kept quiet about it with my clients for about 1 year but realized the excuse of an inner ear infection can only go so far. I did start telling clients and assured them that my dedication to them will not be affected. I'm 45 now and have been successful in retaining clients -- mostly by not telling them more than they need to know. I may or may not have to cross that brige one day.
art's picture
The variety of responses I got was very interesting when I told people at work. It ran the range from the other person crying or hugging me to "well that's life, suck it up" type responses to a blank stare. A few people disengaged from me after the announcement, but the vast majority were very supportive. I can't keep a lie very well, so I basically had to say something.
When it was still an "open secret" (while I was working in a different department)I was not treated well at all. The final straw came when I said one day, "I'm taking a sick day tomorrow because I know others will be around to cover for me, and I need the rest" - and my department head said, "you can't declare that you're going to be sick tomorrow! - you have to come in, get sick, and go home!" (I couldn't explain that it doesn't work that way with MS: I was already sick, and had been working past endurance while I was sick... the result was an exacerbation, of course.) In my new position, I was up-front about my limitations, and everything possible has been done to make things easier for me. Working part-time, flex-time, and telecommuting with support from my current department head (who fought for me to have this right, even though, legally, Federal law says a person in my position is supposed to work on-site under supervision) - it's been a dream job!
I actually didn't tell anyone--I was "outed" by another. One of my bosses asked a secretary if I had been drinking on the job. She is a good friend, and felt caught between the proverbial rock and a hard place. I had asked her confidence about my condition, and she didn't want people to think my ataxia was due to lunchtime tequila shooters. So, she told the truth. The next thing I knew, I was "called on the carpet." My head boss (I work at a lawfirm, btw) yelled at me for not saying something sooner. He told me that they couldn't fire me (my primary hesitation to be forthright) by federal law! And, he told me that they really respected my hard work over the years (been here ten years now), and my boss felt slighted that I hadn't trusted anyone--especially him. But now it's ok. It's difficult, because so many people either want to help TOO MUCH, or just plain ignore me like I'm invisible. I can't do anything about people being uncomfortable, except to be very open about my condition and explain as much as I can when they ask about it. Feels better now too--I think I used the "sprained ankle" excuse WAAAAAAAAY too much. -Christopher
When I started the job I am at now (12 years ago) I had signed up to take the Peer Counseling class. I needed my boss to block my schedule so I could leave early every Monday for 6 weeks. Telling her that I had MS was not a problem, especially since I looked fine. Over the past couple of years, since I started walking with a cane, it became more difficult because the patients I work with are always asking me questions about me. I started telling some of them that there is a federal regulation that stops me from asking them personal questions in the waiting room. That works most of the time. Throughout the years I have become more comfortable talking about MS to strangers.
I came out to my immediate manager and that worked out well, as she facilitated my request for reasonable accommodation regarding a lighter weight laptop computer to ease commuting and travel. Unfortunately, she is retiring and I am uncertain about how to approach the new, as yet unknown manager.
I started a new job at a local college this past spring. During the interview process I told my immediate supervisor that I had MS. He had already offered me the position in a previous interview, so at that point he could not take the offer away. When I told him about my MS, his jaw dropped and he responded "the only person I knew with MS ended up in a wheelchair in 6 months" I knew at that moment I had made a big mistake in disclosing. I thought that by being up front and open was the best way to be, but in my situation, it was not. After several weeks I noticed a big change in the way the secretaries and my co-workers were treating me. My co-workers were not speaking to me, not making eye contact and my supervisor was acting like a jerk - assigning extra work, asking me to submit "activity sheets" documenting what I am working on and how much time I spent on the project. No one else in my office is required to do this, only me. I couldn't figure out what I had done wrong,and why my co-workers were treating me so cold, but I was beginning to wonder if he had discussed my illness with my coworkers without my permission. In June I had an MS exacerbation and missed three days of work. I was limping for about a month and had to undergo 13 days of IV solumedrol. Even though I felt horrible from the medicine and was still very weak from the attack, I pushed myself to go to work so that I would not miss too many days and give them a reason to fire me. Upon returning to work after the three missed days, my supervisor had called a meeting with the head of human resources. He reported to her that he "wasn't happy with my job performance and my absences from the office (3 absences!) and that it wasn't fair to the other employees if I miss work". It was apparent to me at that moment, that he had disclosed my illness to not only my co-workers but to the Human Resources Director as well. The HR director asked me if I knew when I would "have another MS attack?" I was shocked and confused by the way I was being treated during this meeting. I called my union and have begun to look for an attorney who is familiar with these kinds of cases. Several weeks after this meeting, someone left a pile of emails on my desk that consisted of email correspondence between my supervisor, the Provost of the college,other professors the HR director and emails to his staff (like secretaries), discussing my illness and telling them that I have "cognitive deficits". I kept the emails and have them in my possession. I never should have told anyone about my MS. I live in a small town and my chances of finding another job at this point are slim. My supervisor at the college has been told by the union and the college attorney to stop discussing my illness with other people and has been warned. My family feels that I should file a law suit. I just don't know if I want the hassle and stress. I still go to my job every day, but it is awkward and I hate it. I have not developed any close friendships in my office and I am treated like a pariah. My supervisor barely looks at me and he still insists that I submit weekly "activity sheets" documenting my work. I am not sure that this is even legal for him to request this of me, when no one else has to do this. He requested I do this, after I had an MS attack. My job is on a one year term contract and is up for renewal in April 2007 at my one year mark. My feeling is the college will just do away with the line in the budget or redesign the job and change the job title and give it to someone else. I am pretty sure they will get rid of me. I'd love to hear any advice or any reccommendations for a good attorney in the Syracuse, NY area. If anyone else has had a similiar experience, I would like to hear from you and what did you do? Do I have a legal lawsuit? Do I have any rights? Thanks.
I can identify with your problem. I am a teacher and was tereated pretty badly by administration when they found out about my MS, too. Unfortunately, they made me feel really insecure about my job performance even though I am a very good teacher and highly requested by students and parents alike. Because you are a member of a union, you may be tempted to just access their legal advice. I strongly recommend that you follow the advice of your family, WHO LOVE AND RESPECT YOU, to get independent legal advice. This requires the input of a lawyer who is versed in both union and disability matters. Agood source my be the MS Society website. Also, you should get in touch with people locally who can tell you who the best lawyer available might be. An ounce of prevention is worth a pound of cure. If you seek advice before you need it, you will know how to document their treatment of you. Please go immediately for help. You clearly have secret friends who have supplied you with the e-mails that show clear questions about their ILLEGAL practices. Good luck!
Thank you. I have contacted an attorney and filed a complaint this past week with the EEOC. After much soul searching and discussion with family and friends (some who also have MS) I decided to go ahead and stand up for myself and not allow the college and my supervisor get away with this. It is not in my nature to be a fighter or to have the desire to "sue" people and go after them. I usually give people the benefit of the doubt, several times over. I just want to work and support my children, but after the blatant disregard for privacy laws, HIPAA violations, the libel and slanderous gossip and the downright cruelty and the mental anguish this has caused me over the past year, I decided I had to stand up this time and be strong. Were you in a school district in upstate NY? During my recent work in researching similiar cases to mine, there have been several teachers in the upstate NY area who have been fired by school districts after they disclosed that they had MS and had requested a reasonable accomodation. The school districts both lost the cases and were sued. When are employers going to learn that they can't fire someone just because they are afraid the person might become disabled down the road? I think it is all about money and insurance costs. School Districts and colleges don't want to deal with it. Yet, I am sure they get some kind of compensation or "rewards" for hiring people with disabilities. It is all very sad and has caused so much stress on my family and on me.
I am from Massachusetts, but ignorance and bullying doesn't really seem to be limited to a single geographic area. Too bad, in a way, because then we could ship all of them off to that state! I'm really glad to hear that you decided to defend yourself. These types of people do not respect anything but pure power, and they seem to see those with a disability as powerless. It's time they were disabused of that illusion. Patience and tolerance of their uninformed attitude can easily be misconstrued as powerlessness. It is only if we buy into their estimation that we become what they imagine in their small minds. We have the power of the law, both legal and moral, behind us. Don't lose sight of the prize. You will forever be able to look yourself in the mirror and know that you did what was right; they will never have this. Good luck!
Last year I taught English for the first time ever. I'm forty years old and this was meant to be the career change of my life. I worked hard, even directed the High School musical, and it took a lot out of me. The only one who knew I has MS was my teacher leader whom I had sworn to confidentiality. The administrator for my department, the one who did observations of all the English Teachers, the one who had insisted upon my taking the role of Director of the school musical even though I was a new teacher with two young kids at home, decided to let me go. He never knew I had MS. My teacher leader yelled at me for making her protect confidentiality. She said that if she could have told the other English teachers about my conditon, they could have kept me in a protective cocoon. I lost the job, something for which I had passion. I couldn't take it and I didn't tell. I guess it was a mistake.
I came out after one year & for two years all was good. Human Resources was great about everything. But a change in corporate philosophy meant that my oustide sales position (and all others) was eliminated after five successful years. So I was tossed back into an inside sales position that placed great burden on my subordinants. Subsequent discontent led to the recent house cleaning that left all concerned parties unemployed. Middle management should have been able to provide greater support however altered the corporate philosophy has become. No matter. Within five days I had three unsolicited job offers & now work in outside sales in the same industry once again. Of course I am bound by a one year non-compete agreement that will hamper my performance a little bit but not permanently.
The owners (partners) were terrific. We had no handicapped parking spaces in the parking lot. One of the partners successfully campaigned to right that wrong forcing me to apply for much-needed handicapped parking. When I needed to stop working, they were helpful in my adjustment and still keep my space for me.
I let my condition be known when my gait became pretty goofy-looking. I was already a valuable employee by then so my bosses and coworkers were sympathetic, tolerant and flexible, making my employment (gratefully) as comfortable as it could be.
I was diagnosed in 1977, the old fashion way, with a spinal tap. I'm a registered nurse and had already been working 10 years as a staff nurse. By 1977 I had just had a new baby which sometimes precipitates an attack. The stress of childbirth. Actually I had been seeing things happen in my everyday life that shouldn't,dropping things,left sided weakness etc. I continued to work. I was now Head Nurse of the Orthopedic Unit. I continued to work in Nusing Management till 1990 when I realized that even though I had a desk job by then, my memory was being affected and my gait was now very shacky.I was strickly a wall hugger now. My daughter was 18 now and going on to collage. I say that I came out sort of because my staff and the staff and physicians of this hospital knew most things as they happened with me.
I told senior management but no one else. A year later I had a big attack and was out for several months. Senior management was supportive, but when I returned it was clear that my colleagues and subordinates thought I had "something" -- AIDS, Cancer, something -- but were afraid to ask. So I told everyone. I really had no choice. My disease waxes and wanes and I could never have kept it a secret indefinitely. And a secret is a terrible thing to keep, a terrible burden, a bad weight to carry around in addition to everything else. Still, I wish I could have not told. I absolutely feel feel as though my days on the job are numbered as a result of the disease. Although I initially felt very confident in my "rights" via the ADA, I now feel only minimal protection -- if they want to get rid of me they will find a way. I also have come to realize that there are a certain number of people who will never ever look at me and not see the disease. They simply can't see anything but MS victim. Then again there's a hundred other people who forgot all about it! In any case, I vote for telling your top bosses early, but letting co-workers in on it only as a "need to know" kind of situation. No big secrecy, but no press releases either! AN
I canot imagine how stressful it must be to worry about being "found out". My limp - or 'gimp' as it was called before I "outed" myself, made the diagnosis too hard to hide. I have been lucky in the short term, but parttime workers for whatever reason are severely "handicapped" in academia
I started a new job 10 days after my Dx was confirmed (I had accepted the job 3 months before when my Sx were just starting and it is my "dream" job.) At first I wanted to keep it quiet as long as possible. But I am very "open" by nature and that was very stressful for me. Also I decided to do the MS Challenge Walk and wanted to raise $ . Since I am a physician in an academic medical center, I "expected" my colleagues to behave well...and in fact they have all been very supportive. Also I guess the fact that I was raising money for a 50 mile walk implied that I was pretty well. But a month after the walk I had a relapse that shut me down for ~ 6 weeks....so I was really glad that this was not the FIRST my colleagues knew of my diagnosis. I was lucky though that this flare occurred with "perfect" timing and I did not miss any night or weekend call or attending time....although I did have to take incompletes in the 2 classes I am taking. I do wonder how people will react if/when I have to miss clinical time. But another colleague has been out because her husband is very ill so I am optimistic. And overall I am glad that I am "out" at work.
When I was diagnosed I was working as a dietitian at a hospital. My co-workers knew I was going for tests and something was going on so I told them. They told my supervisor. Everything was fine at first but slowly little things began to creep in. I had been working at the Diabetes Clinic for 6 years before this so I had senority. However somebody else wanted some of my hours. I was told I was tired. I had never complained about being tired and did not then or now have ms fatigue. Then my hours were cut. I complained so that did not happen. Three years after my dx, I was approached by my supervisor who read off a whole list of problems; I was taking too long with patients and I was not taking enough time, I wouldn't share my office ???, etc. From that moment on the harrasment did not stop. I went on medical leave a month later with a relapse that left me using a cane for 8 months. I never went back. I tried to file a human rights claim but was told that being on medical leave (unpaid) was accomodation and that I could not file a claim then. I certainly wish I had never told my co-workers.
After a couple of days of deteriorating speech, my speech was so incomprehensible that couldn't even call in sick one Monday morning in January 2004 ... so I e-mailed my absence, saying that I would be in touch after my visit to Urgent Care. A couple of hours later, after an MRI, I had been diagnosed with MS! I was in a state of shock and told my supervisor and friends at work right away. The next day, I received two beautiful flower arrangements. In the next 10 days, as I worked with a speech therapist to recover my speech and had a ton of additional tests, I received literally hundreds of cards and e-mails. By the time I returned to work, even people I had never met knew about me. It seemed that everyone had an MS story --- a family member, a friend, an acquaintance --- and my "coming out" was an opportunity for people to talk. I have learned amazing things about the intimate lives of other people. The openness has helped me a lot too: in many ways, it has made me fearless about the future and given me the resolve to live life to the fullest, as well as I can, as long as I can.
I was very sorry I told my supervisor and coworkers I had been diagnosed with MS. You would have thought I had the plague!!! When I asked to be excused from the fire drills that required me to run up four flights of stairs with a 20 pound fire extinguisher, my supervisor decided to implement a new schedule for the drills and put me on twice as often as the other employees. Also, suddenly I was being reprimanded on a regular basis for petty reasons. I was even reprimanded for missing the office Christmas party. This was even after I had scheduled the day off for a surgical procedure! Then, an employee accused me of physically threatening her. I was again reprimanded but this was two weeks AFTER the supposed incident. From the stress, I had a serious relapse and was down for 10 weeks. Not one of my co-workers contacted me during those weeks and when I returned I was treated with silence and coldness. When I gave my two weeks notice, the department head offered me a month and half pay and insurance if I wanted to leave at the end of that day. I took it and got the hell out. I will never, never tell my employer again!!!!