Friedreich’s Ataxia News Forums Forums Dating, Relationships, and Marriage Do you your friends and family accept FA?

  • Do you your friends and family accept FA?

    Posted by Frankie Perazzola on July 23, 2020 at 12:06 pm

    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?

    Patrick Bach replied 3 years, 10 months ago 2 Members · 3 Replies
  • 3 Replies
  • Patrick Bach

    July 27, 2020 at 8:46 am

    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.

  • Frankie Perazzola

    July 27, 2020 at 2:45 pm

    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!

  • Patrick Bach

    July 28, 2020 at 5:05 am

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

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