Friedreich’s Ataxia Awareness Month reminds me I’m not alone
Loneliness and shame have haunted my life, but not anymore
“He was in a jam/ He’s in a giant clam!/ Rock, rock, rock lobster!/ Down, down …”
The B-52s were blaring from the megaspeakers at the crammed party. I was doing my best to join in the dancing madness. I felt I might fall, but also felt my fellow partiers would hold me up. No longer on the outskirts, I was part of the fun. This moment exemplifies my thriving social life just before I was diagnosed with Friedreich’s ataxia (FA).
As a college sophomore, I was active in everything social: hanging out with my friends, socializing when I should’ve been studying, attending every party I could. I was beginning to break out of the shell that had defined me from kindergarten through high school. As a child of an alcoholic, I’d spent most of those years feeling isolated and ashamed.
According to the American Academy of Child and Adolescent Psychology, 1 in 5 American adults grew up with an alcoholic relative. And with 1 in 10 Americans having a rare disease, it wouldn’t be surprising to find people like me, who are in both groups. Although we may feel alone, we aren’t.
My mom was an alcoholic, and I’m tremendously proud of how she turned things around. She faced a formidable disease with courage and persistence. She was sober for the last 18 years of her life, which ended in 2016.
Two issues I faced, which are well documented as typical for people who grew up in an alcoholic home, were 1) not feeling I could open up to others and consequently feeling lonely, and 2) feeling ashamed of my mother and my dysfunctional family. These issues transferred seamlessly to living with FA.
An important aside: Being a child of an alcoholic may help you develop — albeit not in a healthy way — good traits like empathy, responsibility, and resilience. Alcoholism isn’t a good parenting technique, full stop! I simply want to clarify that we can be wounded and strong simultaneously.
In college, I learned that I wasn’t alone in my experience as a child of an alcoholic. Enough of my peers had lived through similar family situations that I felt the loneliness and shame lifting. I wasn’t alone.
Plunged back in
Then a neurologist diagnosed me with Friedreich’s ataxia, and I dove back into those feelings of isolation and shame. It was 1981. I’d never heard of FA, never mind known someone with the condition. I felt very alone. There was no internet or Friedreich’s Ataxia News to help me connect to other patients. Growing up in an alcoholic home meant I was primed to be ashamed of being different. Consequently, it was only natural that I felt a significant amount of shame over having FA.
To be clear, there should be no shame in having any disease, including FA.
Consequently, I didn’t open up to people about what I was facing. Most of my friends thought I was a klutz or drunk, even though I wasn’t, due to my ataxic gait.
Many of you understand that a rare disease diagnosis prompts countless feelings. Isolation is often one of them, especially if you don’t know anyone else with the disease. You feel as if no one can relate. You try to explain it, but people don’t understand.
That is why FA Awareness Month, observed in May, means so much to me. I see our community active on social media, and I don’t feel alone. Proud, strong, and resilient patients remind me that we should feel no shame.
We call ourselves “FAmily,” and the awareness month is an opportunity to bring more people into our community. Welcoming others to the fold is the opposite of my 1981 instinct to isolate. The Friedreich’s Ataxia Research Alliance provides us with many tools to better explain our experiences to people without FA.
I’ve gone from feeling isolated and ashamed because of my diagnosis to being a member of a strong and thriving community. Thank you, FA Awareness Month, for reminding me of that!
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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