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Young People with FA (general)
What are some concerns you have as a young person with Friedreich’s Ataxia?
Do you have any advice to give or do you have any questions?
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5 Replies
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Life really is difficult, so I had to change. Hanging out with friends got harder and harder because of fatigue and other stuff. Especially without being able to drive or roll around for far distances, relying on friends to come and get you all the time was hard. My friends were also busy with work and their life, and I didn’t like to always ask. So basically I just stopped texting them first, and they texted me when they were free and wanted to hang. Also, I feel as if I lost some friendships because I would never be the first to reach out, so I would change that if I could go back in time!
Making time to be social, studying, resting, working out, was also something I struggled with immensely. And I do now especially living away from home and in college.
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Kyle, thank you for sharing this. Speaking as someone who was diagnosed as an adult, I truly commend you and everyone else who has had or is currently dealing with school and having FA. I went through school with no physical issues and it was the hardest time of my life. Can’t imagine the adjustments and emotions you have gone through. Way to keep pushing and for staying positive. You make such a difference in the FA community!
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for me it wasn’t very hard to meet up with other until 2 years ago i broke my toes and i started to use a cane (crutch) but only for a while i started to go to my school by a taxi i used to walk there. it’s 4 KM walk i used to do it twice a day but like i couldn’t use 2 crutches because my left arm is weak, now i got a walker i feel more able
to do things on my own, i failed in grade 8 because i couldn’t go to all classes my grade 8 was a year fill with doctors and blood tests… grade 12 summer was one of the worse for me in my country (Lebanon) I was supposed to have someone to write for me but i didn’t any help so i didn’t my first time i failed but i didn’t give up i did the second time they got someone to write for me i failed the subjects that i wrote with my typing but like 10.5/20 it was success because in Lebanon you need 8 to succeed. i’m not in university yet it’s been 2 years since my graduation.i did lose many people because of being a disabled person but the people i lost are not worth 1% of the people i got to know.i left some people and i stopped talking to them because they made me go in depressions.
thank you all for being in my life!! special than to @kywaterman @matthew-lafleur and @healing-fa !! -
I don’t like it when people look at me in public because of the way I walk or when I use a wheelchair. It is stupid because most people immediately start assuming things about you when you tell them you have a muscle disease. I wanna be known for who I am and what I do instead of ‘the girl with the muscle disease.’
Sometimes things just don’t work out the way I want them. For example, yesterday. I had a schoolprom. My friends and I made ourselves ready at my friends house. But just only changing made me feel exhausted. And when we arrived at the prom, I had to leave like 30 minutes after because I felt exhausted. Fortunately, I don’t really like my schoolprom so it wasn’t the worst for me but it still sucks.
It also isn’t very nice when my friends are hanging out together without me because they are doing things I can’t. It may not be personal but it is still sad because I feel like I’m out of the group. I feel like AF is controlling our lives and it is. We are young, we should enjoy our lifes without having the big AF pressure haunting us like bad ghosts.
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We know, first hand, how difficult it can be to navigate life with FA at a young age. Is school difficult? Hanging with friends becoming harder? The looks you get in public?
What kind of issues are you facing?
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