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    • #16644

      When it comes to being diagnosed with a chronic illness like FA, it’s not only a difficult to accept the diagnosis yourself but friends and family have trouble too.

      Personally, it’s been difficult dealing with my diagnosis and explaining everything to my father. I don’t think he 100% gets it and I totally understand but at the same time it’s very frustrating. I feel like I am the one living with that disease, and he just has to accept the fact that I have it as well.

      Does your friends and family accept FA? What are some of the biggest hurdles you have faced when it comes to explaining your diagnosis?

    • #16645
      Patrick Bach

      for me it was very difficult and impossible to explain it to my family and friends. when i was 7 it started getting very hard for me to move. i tried to explain it for example to my parents only a few times because they always said that what i feel was normal and everyone gets lazy and tired sometimes and of course i believed them. Also they sometimes referred to my cousin that couldn’t move his legs because of an accident and had a real illness.

      a few years later i got the diagnosis because i had heart racing issues when i was getting ready for soccer training and had to go to the hospital. my Mother was very shocked but for me it was more like a relief cause now i had an explanation for my weird movements and i didn’t get excluded by the friends that already knew me anymore.
      the situation with my family was a bit more difficult. of course they where ok for example while walking with me taking a break. but mostly they saw that i could move my body pretty well when i concentrated enough.what they did not see is that i was concentrating extremely.
      then everybody accepts it when things don’t work anymore. the question for me was when do i accept that something doesn’t work anymore. for me that should and could have been earlier very often.

      thank you Frankie for posting that amazing question.

    • #16651

      Love to hear about other peoples stories. It definitely sounds tougher for someone like you who experienced symptoms at an earlier age. That must’ve been extremely difficult. I think the family is the hardest to get to accept your illness 100%. That’s just what I’ve experienced also. Keep going!

    • #16656
      Patrick Bach

      Thank you. It is so good to see that there are other people struggling with that

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