I found out who my real friends were after I was diagnosed with FA
My message to young people diagnosed with FA: You are not alone
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I imagine young people with Friedreich’s ataxia (FA) must search the internet to learn more about their diagnosis. Maybe they will come across this column. So this week, I will write to them.
When we are young, our friendships are central to our lives. But after I was diagnosed, I found it difficult to figure out how to interact with my friends. Would they stand by me? I felt like a freak. Would they think I’m a freak? Could I trust them to let me tell people about FA on my own terms? There was a lot going on in my head as I navigated my friendships in the midst of my diagnosis.
It was a scary time for me. My body was not cooperating with what my brain wanted to do, and everyone could see it. I live in a part of the country where winters mean lots of snow and ice, so I was used to walking on it. But suddenly, I couldn’t. Every time I hit a patch of ice, I would fall, and I didn’t know why. Whenever I slipped on the ice, I wanted to cry, but instead, I laughed. I did that to try to make things seem normal.
My friends were starting to wear high heels, but I couldn’t. My ankle would twist. I tried to play field hockey, but instead of getting better like my friends, I got worse. I felt I would never be accepted because I couldn’t do the things they did so easily. My body was making me an outsider.
To tell or not to tell
I didn’t know what was going on, and I felt uncomfortable telling my friends. They sensed something was happening with me, but I still didn’t say anything. I was afraid some of them would abandon me. Some of them did. But I knew some of them would stand by my side. They still do, even though I didn’t tell them about FA until years after I was diagnosed. Your good friends will be scared for you, but they won’t leave you. The friends who leave you are not good friends.
It’s been 44 years since I was diagnosed with FA, about 48 years since I became symptomatic, and this much I know, and would tell my own younger self: Friendships in the teens and tweens are hard for everyone, chronic illness or not. But if I could give my younger self some advice, it would be to always tell your friends how you feel — before, during, and after the diagnosis. Some of them will show you how amazing they can be. You may think you’re being a weirdo, but you’re likely showing them how to be a good friend by letting yourself be vulnerable. Some of them might leave you, and you’ll be sad, but you can make new friends.
Just a quick note, because I often forgot this when I was younger: Your parents and siblings need to talk to their friends and family about your FA, too. It feels like it’s about you because you are the one who is sick, but they also need support. Try not to forget that it’s hard for them, too.
Finally, there are ways to connect with other people with FA or other rare diseases. The Friedreich’s Ataxia Research Alliance (FARA) ambassador program offers a hangout space for teens and will soon provide one for tweens. Email [email protected] for more information about these programs. Try attending a FARA event. Maybe a Muscular Dystrophy Association camp or a similar program for people with disabilities would be a good fit for you.
Receiving a diagnosis can feel scary, lonely, and overwhelming. But being a friend and having friends can help lift you out of those feelings. Your friends will carry you through years of fighting FA. When it’s hard to be brave, remember how much you’ve been through and how strong you are.
Many of us will do our best to be there for you. I am sorry you have to be on this journey, but you are not alone.
Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.
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