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    • #16269
      Leah Leilani

        Does your spouse or partner ever down-play or question the reality of your symptoms? How do you handle tough situations like these?

        Many of us already experience frustrating condescension from our doctors. Not to mention our own worries about the severity of our mysterious symptoms. Although our loved ones may think that sharing their opinions about our medical problems is helpful, it usually only adds to our stress.

      • #16278
        Phil rosenstein

          This is right up my alley. I assume many other DM2 patients as well. It has never been from friends or family though.  DM2 is kind of like many cases of multiple sclerosis and a few other diseases in that strangers will look at me and have no idea that I have this condition. I appear to be like every other healthy person. I have had neighbors or strangers ask my wife why she was shoveling all the snow or mowing the grass. “Your husband should be doing that”

          I usually don’t park in the handicapped parking spaces, but I occasionally use the handicapped placard when I am not feeling well. And there have been times when I get a stern look from someone who thinks I’m just a selfish jerk.

          And there have also been times when someone asks for help lifting something and I then have to opt out gracefully or explain that I cannot because of the DM2 (which I would prefer not to do). This has actually happened a lot.

          So, no, my friends who know and my family have never underestimated my condition and symptoms. If anything, my friends and family usually try to baby me. It is just acquaintances and strangers. And that is simply because I do not look like a person with a condition.

        • #16279
          Leah Leilani

            I know some of what you’re talking about Phil. My type of MD is invisible too. I do use a wheelchair when I’m out and about so I don’t have people ask me for help or give me looks when I park in the handicapped parking spot but if I’m shopping and get out of my chair to reach something, I can feel the stares.

            • #18349
              Annette Murphy

                Hi there, I often find people a bit judgemental at times.  They often profess their ignorance by saying things like you are an invalid or you are handicapped a bit hurtful.  Many people often assume I will end in a wheelchair or a popular is assuming I have MS.   Another rather insulting thing is calling persons with Muscular Dystrophy ‘retarded’ or saying everyone one with Duchenne MD is intellectually disabled, which is far from the truth.


                I have Limb girdle Md, but was neved told which type and also I was told I that Limb Girdle is a form of Becker MD when I am not make not in a wheelchair.


                Happy Easter/Passover, etc,


                Seasons Greetings,

                Annette from Ireland.



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