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Disclosure advice

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    Disclosure advice

    I am looking for advice about disclosure, both in general and in the workplace.

    I was diagnosed over 5 years ago. I was on tecfidera for a year and Tysabri for 4 years (50th infusion is next month!!). I've been fortunate to have relatively mild symptoms. I have a permanently slightly numb leg, one side of my face is always a bit numb, and I get cold easily. I find myself limping and my leg gets more numb when I'm tired or have been walking for a while, but I can control my limp if I focus on walking "normally". Very few people in my life know about my diagnosis.

    For a while now, I've been thinking that I'd like to make it generally known about my diagnosis. Not that I want to announce it publically or anything, but just let people know occasionally. I hadn't wanted to disclose at work, but I now feel more comfortable in my position and seniority. It's really hard for me to put it into words, but keeping my diagnosis secret makes me feel like a fraud. Instead of making some vague excuse about leaving work early for an appointment each month, it would be so much easier to be upfront about the fact that I am going to get my infusion.

    I know there are downsides - once I disclose, I can't take it back. I do appreciate anyone's opinion about their experiences!

    Originally posted by sarabeach123 View Post
    I know there are downsides - once I disclose, I can't take it back. I do appreciate anyone's opinion about their experiences!
    Hi sarabeach123. It is a tough decision and as you said, you can't take back disclosure.

    I know the NMSS generally recommends only disclosing if you need an accommodation. Even then, you don't have to disclose the diagnosis, just have a doctor's note saying it was medically necessary.

    After I had a few problems getting off when I
    needed to for Ty infusions, I did put a request in for intermittent FMLA. I didn't disclose my MS.

    Prior to starting TY,I was having issues with fatigue and cognition - a viscious cycle. Not sure if cognitive struggles affected fatigue or vice versa. Anyway, towards the end of my career, I did put an accommodation in to work 1-2 days a week from home. When I did that,I disclosed to coworkers, as some perceived favoritism. I could have just said medical or personal reasons, but I said MS. Funny, my boss kept telling me that I didn't have to tell anyway, but I wanted to.

    I was fortunate and had nothing but support for me from my management and coworkers. I worked for a large company and surprisingly, it stayed within my group and HR. Some actually feared that telling others, especially our business users (I was in IT), might lead some to question my performance even though just normal IT project issues.

    I had a very positive experience. They were and it was a relief to not pretend anymore.

    There are others on the board though that have posted horror stories once they disclosed.

    Do you have any knowledge of your company's history based on other users? Sometimes that is just as important as your department's handling of it.

    Good luck deciding!

    DX 01/06, currently on Tysabri


      I would have to say to look at your company's past record with others who have health conditions. My original employer was great towards providing unpaid time off for people with health conditions of any type (this was long before FMLA), but then we acquired a manager who found ways to punish staff members who began using FMLA after it was passed.

      When my MS flared up badly at my last job, I still didn't have an official diagnosis. I went to my immediate supervisor and leveled with her. This was easy to do, because we had a good relationship, but I really don't know how successful I would have been with someone else. I explained that I was doing the best that I could but that sometimes I might need to sit down for brief periods or split my break. She was fine with it and let the other managers know that I was authorized to do whatever was needed. As my health worsened, she worked with me to reduce my days and then my hours. It did cause a few problems with some of my co-workers who didn't know what was wrong with me and saw it as favoritism.


        I have no advice. I am new at this, sorry. But I wanted to say that I totally get what you are saying. I also plan to keep this on the down-low but I also struggle with the inauthenticity that creates for me, as a person. I am typically pretty transparent - what you see is what you get. But somehow, in this case, I don't really feel like sharing. I need time for me to process. I also don't want the peanut gallery comments.

        I hope you find peace with whatever you decide to do.
        "Ring the bells that still can ring. Forget your perfect offering. There is a crack a crack in everything. That's how the light gets in.
        ~Leonard Cohen

        DX March, 2022. Ontario, Canada


          I'm not sure I have good advice. I disclosed when I was working. I was just more comfortable.
          ~ Faith
          MSWorld Volunteer -- Moderator since JUN2012
          (now a Mimibug)

          Symptoms began in JAN02
          - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
          - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08

          - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
          - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.


            my story is very different when I disclosed to my employer I was terminated due to my inability to perform !!! I was put out to pasture on disability .. My advice if you do not need to,,, do not disclose ...ask your self can you handle no income or disability income which is 1/2 of what you made or less ??


              I am not particularly worried about my position anymore. I was worried when I was first diagnosed, but I have over 10 years of employment at this job (and there is a Labour law that makes it difficult to fire employees with over 10 years of service in this province). My biggest worry is just the perception that I am weak. Of course, worrying about how other people perceive you is not a good use of your energy, but sometimes it can't be helped.

              I am so incredibly fortunate with the progress of my MS so far. I feel I also owe it to others to show a positive side of MS. Of course, I have some issues, but they aren't debilitating. I was diagnosed very quickly, even with minimal symptoms that were ignored at first by doctors. I started medication very quickly, and tysabri has kept me relatively stable. I have also been extremely pro-active with a naturopathic approach as well. I feel very fortunate and although there are always lurking feelings of doom, I stay positive in the knowledge that since the first 6 years with MS have not been drastic and I have been able to hide my diagnosis from most people, I am hopeful that the disease will continue to be mild.

              I also know that my medication is expensive and we recently had our group health benefits monthly premium increased (I realize this isn't just me - there must be others who are also using the health benefits a lot as well!) Overall, the stress of "secret-keeping" is the most difficult for me. The entire staff is very close, and I consider many of my colleagues to be friends. I feel that I have withdrawn from social situations since my diagnosis. I don't feel that I can be my true authentic self.