Why I now push back against a faulty comparison to FA
I can honor those seeking connection while explaining what doesn't help
“Nope, not the same.”
I’ve been saying that a lot recently. It might be my age. But it could be that I’m tired of the metaphorical yardstick we all seem to use, drawing comparisons between life experiences.
Either way, I’ve been speaking and owning more of my truth about parenting a child with Friedreich’s ataxia (FA). It feels good.
We’ve all spoken out, and, most certainly, we’ve all had that moment in which an expressed challenge is met with a comparative narrative: “I understand how you feel because ____” (fill in the blank). But the blank is almost nothing like what we face with FA or rare diseases in general. So it leads to this moment of disjointed self-assessment for me.
Is FA not as hard as I think it is? Am I just experiencing normal life and overreacting to what I perceive as a challenge? Should I be more grateful that our demands aren’t worse?
I’ve found myself caught in these inner deliberations since my daughter Amelia, age 11, began displaying symptoms of FA. I once mentioned being overwhelmed with medical appointments and heard it compassionately compared with taking a child to the orthodontist every week while managing multiple sports schedules.
Nope, not the same.
Why do we need to compare?
We do it because we’re trying to connect. When we hear someone is struggling, our beautiful brains want to understand. We reach back into all the similar experiences we’ve had, searching for a comparison. We do that in all settings in life because it helps us better understand things. If you’re into statistics, you’d call this benchmarking.
Though this comparison might help your brain, it doesn’t create that heart connection we all seek. For me, it’s sometimes unintentionally left me feeling small.
I’ve even minimized our experiences over time, to my detriment. We’ve poured so many resources into managing FA, both emotionally and financially. Still, I downplay the impact.
At the risk of passing on other comparisons, I was reading through some research on FA when a sentence made me feel seen and validated. It’s a hard quote to read as a mom, but it spoke such truth. According to an article published in Frontiers in Pharmacology, “In the US, healthcare costs of FRDA [FA] patients were higher than those of ‘adults with two and more chronic conditions.’” And that’s just talking about money.
That goes a step further in this article by Mark Payne, MD, in JACC: Basic to Translational Science. FA, he writes, “imposes substantially greater burden and stress on patients and families compared with other diseases for both quality of life and expense.”
After reading that sentence, I closed my computer and my eyes. I exhaled.
A way forward
Listening to understand the challenges of others without creating a response is hard. As a social worker, I’m trained to listen, but I also know it’s easier to interrupt as a way to fix or normalize challenging experiences. We even do it to ourselves! We push down our thoughts and suppress how we feel, becoming disconnected.
From this experience, I take away two lessons. The first starts with me.
Lesson one is to see and appreciate myself in this unique journey. That means listening to myself in all the ways that I’m showing up in this life. Sometimes I show up in incredible ways, and other times I’m just tired. I must work to avoid the compare and despair trap in my mind.
Lesson two is how I interact with others. Setting boundaries when comparisons arise is healthy. At the same time, I want to build a stronger connection with others, so maybe next time when faced with a life association (there’s that yardstick), I won’t just say, “Nope, not the same.” I’ll follow it up with gratitude for trying to understand me and share why a comparative response doesn’t help.
I’ll put out my ask for what I need. In most cases, that’s someone to listen without trying to fix me, thus honoring my own voice and experiences. I’ll work to do the same for others. Watching our family and our beautiful child go through our challenges cannot be easy.
This Friedreich’s Ataxia Awareness Month, I want us caregivers to be aware of what we need in this journey. For me, it’s being honest with myself and others. And when I lose my way, I’ll take a moment and recalibrate.
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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