How a different perspective offers lessons to learn
People who can't understand life with FA may still have something to offer
Friedreich’s ataxia (FA) can feel incredibly isolating. I’m fairly certain that rings true for most people going through life with a rare disease.
Because FA is so rare, affecting only about 1 in 50,000 people in the U.S., few folks have even heard of it, much less understand its symptoms and its progressive degeneration of one’s abilities. Explaining FA over and over again is tiring and emotionally draining.
Being the only one in my community with FA and having a spotlight on my disability sometimes makes me feel like a one-in-a-million girl, in all the wrong ways. However, a degree of visibility and transparency is necessary for awareness efforts, in my opinion. Some teaching about FA is therefore needed, and in my experience, the effort is worthwhile.
Although people try their hardest to empathize, it’s pretty hard for them to relate to life with FA unless they’ve dealt with an inability to move through the day with any semblance of confidence, grace, speed, or ease. That can make me feel like I’m shipwrecked on an island, alone and disabled.
Yet when I pause, I can look at my reality from a different, more honest perspective. After all, I can deeply empathize with a news story about a house fire destroying a family’s possessions, celebrate the news of someone’s cancer being in remission, or wait with bated breath for rescue attempts on Mount Everest to be successful, even though I’ve never personally experienced these situations. I can donate clothes, food, and money to relief efforts, I can send flowers to the person celebrating their health, and I can pray for the rescue efforts.
In the same way, others can walk with me on this journey through FA. I just have to choose to let them.
The myth of separation
This leads me to my point: If, like me, you have FA, you’re not alone. Your life, your FA, your struggles, your triumphs, your acute needs, and the lessons you’ve learned don’t exist in a vacuum.
Even if you don’t get regular FaceTime with fellow FA patients, there are people who want to know your story better and others who want to help make your journey a little better. If you haven’t found them yet, don’t give up your search. They’re out there!
On that note, I have some advice for people who might be trying to comfort, befriend, or support someone whose abilities are different from your own. The first is to remember that we’re just like you. We’re just trying to feel safe, fulfilled, seen, and valued. Treat us how you’d want to be treated.
Additionally, take cues from us. We want to share our life experiences with others, but not in a way that makes us feel like a lab rat or the subject of a tragic documentary. Offer to be a help by opening doors or carrying things. If we’re doing OK, then treat us as you would any other acquaintance.
Lastly, be the friend you’d like to have. I think that’s great and universal advice for any situation. As “High School Musical” noted, “we’re all in this together.” So let’s try to be the type of person we’d like to be around, which can help us feel less alone.
“Two people are better off than one, for they can help each other succeed. If one person falls, the other can reach out and help. But someone who falls alone is in real trouble.” — Ecclesiastes 4:9-10 (New Living Translation)
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.
About the Author
Cynthia Toy
I was diagnosed with FA last year. Like many I had never heard this condition. My research led me to write a book ( I just finished it last week). It is both informative and humorous. I will comment when it is published.