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    #1

    To tell or not to tell

    This has been on ongoing debate for years and many threads started on this topic. I always kept my MS secret all these years and even warned others to do as well. Maybe because I didn't want to be defined and I was embarrassed by having MS.

    However in the past yearI just stopped caring (age does that one.) So I started telling my kids teachers and one mother. At first I regretted it and thought what a terrible mistake I had made. But as time passed I told everyone and it's been great.

    I thought I would be looked at weird by everyone, or people would avoid me etc.. but the opposite has happened and I am treated like princess and it awesome. A couple of the Dad's have started fund raising for the cause AND for me so I can go get treatment out of state, A lot of the parents at the school and the teachers wear orange bracelets, I have so many people come up to me now telling they know someone who has MS, I have made many many new friends and everyone knows my name. it's been wonderful.

    So for the years I hide my illness for fear I would be treated horrible by everyone, I finally came out and it's been nothing but good. So for those of you who are afraid to be honest. Don't be. I feel so free now because I have been honest.
    Suspected MS 1985. dx 1994 still RRMS EDSS 1.0
    Tags: None
    #2
    Katje - Great post and thank you for this reminder for those of us living with that kind of fear. I was very honest and open from the beginning and have had nothing but caring and understanding people in my life to help hold me up (literally and figuratively!) You're right - it is very freeing!

    I do understand however, disclosure might not be possible in the work force and each of us needs to weigh out everything before we open that door.

    I am happy for you and glad that you can use your honesty to help further educate people.

    Take care now
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

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      #3
      I did not disclose until I got out of the workplace.

      But I let everyone know now...and you are right. It is liberating, and I too am treated very well by everyone except my Mother who is ashamed. I can tell you a Mothers love certainly is not unconditional...well...my Mothers isn't.

      But I don't have the horror stories that some people have here. I must live in a really polite town. People know I have MS and they are exceptionally kind to me. And yes, everyone I know is wearing Orange for me this week and one of my Doctors is biking the 150 in my name.

      There is a lot of kindness out there for people with MS...but we as MSers have to educate them. And I think that responsibility falls on those of us that are not working...and believe me I am doing my part, just as you are Katje!

      Thank-you for this thread.
      Katie
      "Yep, I have MS, and it does have Me!"
      "My MS is a Journey for One."
      Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

      Comment

        #4
        I kept my secret for a very long time telling only my family and just a few close friends - and I asked all of them to not tell anyone, although I'm sure they did. I also did not want to be defined by my MS. I didn't want the pity. I recently started a blog - my coming out - and it was like being diagnosed all over again.

        No one has treated me any differently, but I wish I'd just done it from the beginning so I didn't have to go through the diagnosis "twice". I was an elementary school teacher for 13 years and my principals all knew, but I wasn't out for appointments or symptoms at all either - though they all told me to feel free to take time as needed.
        RRMS diagnosed 8/2004, no meds

        Acceptance doesn't mean resignation. It means understanding that something is what it is, and there's got to be a way through it. ~ Michael J. Fox

        Comment

          #5
          Originally posted by KatieAgain View Post
          I did not disclose until I got out of the workplace.
          I think this is an important caveat.

          As long as I am working, there is no way I'm going to subject myself to the pity, scrutiny and possibility of discrimination until my MS gets to the point where I can no longer hide it.
          He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
          Anonymous

          Comment

            #6
            Originally posted by Jules A View Post
            I think this is an important caveat.

            As long as I am working, there is no way I'm going to subject myself to the pity, scrutiny and possibility of discrimination until my MS gets to the point where I can no longer hide it.

            I was like that too. I never told anyone in the workplace for the same reasons. But as years have passed I started telling a few people and now that it's out it's been all good for me. I am in the music business and they have been very supportive. All they want is for me to get better. It would have difficult for me to afford the HSCT in CHicago alone that I want. They offered to pay for everything AND allow me to work from home whilst I recover which would be roughly 6 months to a year.

            It's not always doom and gloom when you reveal the truth, but yes I can certainly understand keeping it to yourself.
            Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

            Comment

              #7
              I was "fired" from a job once

              I didn't tell anyone. Back then I stayed in bed every afternoon/evening/& weekend. I always rested so I could go to work full time M-F. I didn't need a cane back then. I could still walk.

              I did all my accounting work. One day the head CPA called me into his office, closed the door, and said "You're fired. Never come back here again,"

              I guess the med ins company that handled their ins conversed with him that they would have to raise rates if their employees had ms?

              I don't know, just guessing. And after that, I paid for my ins through my husband's work.

              Again, I don't know. Life on this planet, some good, some _ _ _ _ _

              Comment

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