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People who think you're not really sick

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    #31
    Thank you for posting this.

    My children are grown and gone now. 2 daughters, 33 and 35. they treat me like I am a hypochondriac. They have no clue because they don't want one. It hurts me immensely and compounds my loneliness. I seldom go out anymore and I live alone. they seldom visit because they might have to help me. I don't ask for help anymore, but they see 'something' is off and think I should be able to fix it on my own. I pray they do not get this, but at times I do wish they would so they might at last understand.

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      #32
      I use to get so irritated when people would think I was "faking". Now that I have a cane for balance issues, people for the most part have stopped talking about me faking it. Now they are ask questions which I am more than happy to answer.
      Diagnosed: May 2013
      Device: Cane
      MEDS: Tecfidera

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        #33
        I am so sorry that you are being treated this way. My mother had MS and so many people thought she "wasn't really sick". My grandmother (on my dad's side) used to say it often and I finally told her to never, ever talk about my mother again.

        I was diagnosed in November 2012 and thank goodness my story is quite different than my moms. My family is very supportive.

        I hope you have or will find close friends who DO understand that you have a terrible disease. I hope you find the empathy that we all need.

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          #34
          This is why I don't talk about my MS to anyone, really.

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            #35
            Originally posted by Sdickerson1 View Post
            What gets me is being compared to people who have a less aggressive form of MS and who are more functional than I am.... I even got this from someone with MS!!!! ( you can't have MS! I'm never that sick!). Congratulations!!!!!!
            This is super old but yes, I get that too!

            "Well, my friend/cousin/whoever has MS and they can run/walk/jog just fine."



            That's nice and it would be nicer if I could do that too, but I can't! Sheesh.

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              #36
              Originally posted by melaniemic View Post
              I seldom go out anymore and I live alone. they seldom visit because they might have to help me. I don't ask for help anymore, but they see 'something' is off and think I should be able to fix it on my own. I pray they do not get this, but at times I do wish they would so they might at last understand.
              That is rather sad.

              But that cute little dog in your avatar, is that Pekinese? Sure is a cutie. I use to have a Pek and had to comment on that cute little companion you have! fed

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                #37
                This is perfect! So many good resources/ideas where that I've needed. Thank you.

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                  #38
                  Originally posted by melaniemic View Post
                  My children are grown and gone now. 2 daughters, 33 and 35. they treat me like I am a hypochondriac. They have no clue because they don't want one. It hurts me immensely and compounds my loneliness. I seldom go out anymore and I live alone. they seldom visit because they might have to help me. I don't ask for help anymore, but they see 'something' is off and think I should be able to fix it on my own. I pray they do not get this, but at times I do wish they would so they might at last understand.
                  Excuse me? My kids getting MS is my greatest fear in life.
                  Aitch - Writer, historian, wondermom. First symptoms in my teens, DX'd in my twenties, disabled in my thirties. Still the luckiest girl in the world.

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                    #39
                    I think she meant getting it as in understanding, not having MS themselves.

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                      #40
                      Hate It!

                      I just can't stand when people say to me how come you look so good. It can't be that bad. One of my comments was.......It's so difficult to explain but it would be great if you could be in my shoes just for one day. I didn't mean it in an evil way........just being honest.

                      Good thread!

                      Susie Q


                      Diagnosed 6-28-14
                      RRMS
                      Alone we can do so little; together we can do so much. ~Helen Keller~

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                        #41
                        Ugly situation

                        Commercials showing people with MS in the best case scenario doesn't help. Many people have known others with MS who apparently had a benign form and experienced little progression for 50 years.
                        I know we wish we could open their eyes, but also accept that they don't have a vested interest in learning about it. Where does it end? What about ALS? Fibro-M? Strokes? Pick a disease. Even having MS (PPMS), do we spend our time learning about all of the others? No. We may read some, but not obtain the level of understanding we have of OUR disease.

                        I approach each person as an individual. Some really want to learn. Others provide lip service. The worst are those who use the disease for pity, claiming they have it when they don't.

                        I also hate that doctors diagnose MS, but don't follow the protocol. A good friend claims she had MS and cured it through diet. Claims she had 2 lesions and now she's healed. One MRI and diagnosed. Then to have them spread around that they were 'cured' and telling you that you just need to read a book and follow it.

                        You meet every type out there. It's like Facebook posts. Read and believe. No personal research into what they're saying. Can't let it bother you.

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