The dangers of making comparisons between FA and other diseases
Comparing conditions can have many pitfalls, a columnist cautions
My husband, Dave, and I have been watching “Red Election” on Hulu. One of the ads we’ve seen repeatedly is for a medication for Dupuytren contracture (DC). DC is a treatable, but not curable, disorder in which one or more of the fingers is permanently contracted. People with DC cannot flatten their hand and may experience pain.
Every time I see the ad, I get irritated. I think to myself, “This disorder is not as deserving of a cure or treatment as the disease I have, Friedreich’s ataxia (FA). Why isn’t there a prioritization of the foci of medical research? I have many more symptoms that seem a lot worse than not being able to flatten my hand.”
Two of those symptoms are debilitating fatigue and degeneration of the nervous system. The latter has caused muscle weakness and poor coordination in my legs and hands. Because of this degeneration, I use a wheelchair. Because I’m frequently tired and unable to remediate my fatigue, I can’t do everything I want.
So I think, “It must suck not to be able to use your hand in the way you would like or have used it in the past. But come on, having your life threatened and drastically altered by FA is worse.” Right?
What is true? It’s true for me that having FA sucks. It’s probably true, for someone with DC, that having DC sucks. I do know that someone who has Dupuytren contracture is as deserving of treatments and a cure as I am!
Maybe FA is way too complicated of a disorder to treat and cure. That could explain why DC has multiple treatments and FA has one. More people have DC; in the U.S., roughly 17 million people, or 5% of the population, has DC. Meanwhile, about 5,000 people have FA. Those numbers throw my idea of priority-setting into the garbage, because whoever sets the priorities might focus on the number of people affected, rather than the severity of the disease.
Maybe a treatment for DC could lead to treatments for other conditions. The point is, I don’t know any of these things and am just making myself feel less appreciated than I should feel because I don’t know the facts. Maybe someone at the National Institutes of Health does? I sure don’t.
Why do I need to compare my disease with someone else’s?
The blog “Mind, Body and Soul” says we’ve evolved to make comparisons, and that “comparisons are a normal part of human cognition and can be good for the self-improvement process.” While I needn’t beat myself up for making comparisons, it’s important that I know the pitfalls of comparing myself — and, by extension, my disease — with others.
My friend and colleague at FA News, Elizabeth Hamilton, explains the need to compare beautifully.
It’s essential I keep checking in with myself and recognizing that there’s more I don’t know than what I do know. I have a lot of thoughts on making healthy comparisons when your disease leaves you less and less able, but I’ll save those for another column.
When Dave and I watch the next episode of “Red Election” and likely see the ad for a DC treatment again, I plan to remember that everyone deserves to be healthy.
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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