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    • #19125
      Jodi Enders
      Keymaster

      Do you let someone know if they have offended you about your MG or illness(es), or do you keep it to yourself?

      Does this depend if it is an acquaintance, friend, family member, or stranger?

      I used to speak up, but it created a hostile environment occasionally. I only share my feelings on how someone made me feel now if I will be re-encountering this individual and if they have done this frequently.

    • #19237
      Dev keshav
      Participant

      There is someone I know who recently started being helpful. Bit I don’t know how to deal with things she says. She doesn’t understand what Myasthenia Gravis really is in spite of me explaining. She keeps telling me that she is praying for me and that I must have faith I will be cured. She also suggests home remedies to make the drooping better, like put cucumber slices on the tires eyes. The other thing is be positive and you’ll get better. I have tried to answer , but she won’t listen. She talks more. I don’t believe that she is being nasty, but nothing gets through. My MG is in. Bad state at the moment, and in a way she is the only person who is touch with my wife and being helpful. Any ideas?

    • #19236
      RINA NEL
      Participant

      Not so much. Sometimes it is frustrating when you know it is your neck and middle back that is causing your headache and discomford and a friend/family member suggests you should do this or try this or drink this….very annoying. I then blow my top and tell them in no uncertain words that I KNOW WHERE THE PAIN COMES FROM.
      Somehow people always tend to know more than you.
      I suffer a lot from cramps in my legs…even when I am sitting in a restaurant I will have to jump up and stretch my legs to get the cramps out. And then you will get it: try Manesium, take more salt etc.
      I sometimes feel like swatting a person to the ground when this happens.

    • #19241
      Gary Lidiak
      Participant

      First off, offended is a very strong word; I never find myself getting offended. MG is a very rare and unknown disease. How do we expect our friends, family, and others to understand what we are going through? It is not a one size fits all disease. I do like to hear ideas that could help symptoms I have. For example, I was told pineapple juice helps phlegm which I was having a lot of. It worked. Not all suggestions are as helpful. I have a number of neighbors who one day told me as a group, that I needed to walk, exercise, and lose weight. They said that would allow me to get better. Instead of being offended, my wife and I printed a handout explaining what MG is and how it relates to me. We gave the handouts to them telling them to read at their leisure. Everyone approached us later saying how informative the paper was, what a greater understanding they have, and thanked us for taking the time to do it. We now have a blog that explains MG and how it relates to me personally. We refer folks there when they have questions.

    • #19729
      Sophie
      Participant

      With strangers/acquaintances/coworkers: I feel less offended as time passes because I learned “people just cannot understand”. It is such a rare condition. I used to explain briefly in a few short sentences describing MG but nowadays, I don’t bother. If I am around them often they can see it for themselves. IMO, it is not the MG that they want to learn about but how I face the challenges that come with it, so I make every effort to be reliable, hardworking, punctual despite looking & feeling like a train wreck sometimes because MG is kicking my behind. And after awhile, most people would have more respect for me whether I have disclosed my illness to them or not. I also make up for people’s ignorance and quick judgments by doing more self-care (more sleep time, relaxing with scented candles, playing with my dog, eating delicious meals, going for a massage, etc).

      With family & friends, they are very supportive and understanding, if they gave a silly advice, I don’t feel offended because it is coming from a good place.

      • This reply was modified 1 month, 4 weeks ago by Sophie.
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