Do People Want to Hang Out With Progressive Disease Patients?
I’m no stranger to this question, but I wasn’t the one who posed it recently.
Ever since I was diagnosed with Friedreich’s ataxia (FA) in childhood, I’ve dealt with its progressively disabling symptoms, including the transition from awkwardness to quitting sports to using a wheelchair — all during puberty.
0/5 stars. Would not recommend.
FA’s trajectory is pretty common in those of us diagnosed with it. After we lose our ability to walk, almost all of our other physical capabilities taper off slowly.
As an emo teenager I often wondered, does anyone really want to hang out with me? I assumed I’d grow out of that question as I matured, the same way I grew out of enjoying Twenty One Pilots.
So when I asked my friend Nick Carbone for a topic that all FAers could relate to, I was surprised that this was his answer. Maybe wondering about loneliness and self-worth in the face of progressive disability is always relevant.
Nick impresses me. He’s around my age, he and his wife are parents of a 1-year-old girl, and Nick is a practicing lawyer who started his own law firm. We connected because we are both FA patients, were both diagnosed at 11, and our rates of progression seem quite similar.
Even though Nick seems to be championing living with a debilitating disorder as a husband, father, and business owner, he can still doubt himself. And as the question reminded me, our physical decline with FA can’t be isolated from our feelings of self-worth.
Spending time with an advanced FA patient — like me, like Nick — is different from spending time with an able-bodied person. Hanging out with us involves accommodations and planning, some physical help, and tolerating some physical symptoms (like our slurred speech, vocal volume, and some hearing limitations).
It’s no surprise that because of that extra effort, we are often viewed as being a lot of trouble to hang out with. Some friends, and even some family members, avoid us. And since FA has no effect on our cognition, we tend to take it personally. (Why does no one want to be around me? Maybe the problem is me, not FA.)
Not every friend is ready to take on the role of our personal-care attendant (PCA). Although that may feel profoundly shitty, we should show them a little grace. They are not evil. They are trying to make it through life and be happy. FA scares them. Heck, it scares me. If I had the choice not to deal with FA, I wouldn’t. Those choosing whether or not to hang out with us face the same choice.
And a deeper question is: If a friend takes on the role of PCA, what effect does it have on the friendship? Sadly, there is no answer besides “it depends.” Sometimes the relationship will be strengthened, other times it may be stretched thin and abandoned, or the relationship may not be impacted at all.
When we wonder why no one seems to want to hang out with us, may we remember this truth:
We are more than FA.
Each person diagnosed with FA has a unique story. Our progressive symptoms have taught us something. Maybe we’ve learned empathy or courage. Maybe now we can authentically root for the underdog. Maybe we’ve created our own law firm in spite of it.
Now that’s a good story. And anyone who doesn’t want to hang out with FA patients is that much poorer.
We are worth it. All of the special needs, all of the accommodations, all of the favors others do for us.
It’s devastating that sometimes it seems no one wants to hang out with us. But our story matters, whether we are a lawyer, a columnist at Friedreich’s Ataxia News, or a reader.
Whether you are confident in your abilities with FA, close to giving up, or somewhere in between, stay strong. Even when you feel alone, the world is richer and a tiny bit better because of you.
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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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Comments
Ulrich Brunner
Thank you Matt for this motivating letter. Well done and so important to recognize every day. Kind greetings from Germany - Ulrich , father of a 14 year old son with FA 👍👍
Wishing you all the Best
Brent Boon
Thank you so much Matt for bringing up the topic of friends. We are a family of 5 with 3 FA members. All adults now and living independently however friendships have been a lifelong struggle for all three. It has not been so much that they do not have friends but more to do with no friends visit or call. Always the initiative comes from our kids not from their friends to book a visit or some such. They become forgotten and feel that deeply. Our family unit is strong and we will continue to celebrate life as a family. However I do appreciate the value of what friendships could bring to our three fine young people.
Mark Potter
Given what we have witnessed over the past year being "able bodied" holds nothing over a able mind,stay strong.
Rayme
Your writing is illuminating and displays a deep profound wisdom. I am a geriatric psychotherapist and feel awe when I Witness someone of any age willing to embrace “ the good, the bad and the ugly.” Thank you for your
Loving and compassionate perspective despite the overwhelming ignorance and fear
that pervades our society.
John Lagedrost
Great piece, Matt