Magical thinking was ever-present in my early days with FA

Before my neurology appointments, I practiced tasks like touching my forefinger to my thumb, forming the “O” of the “OK” symbol. Part of my exam was, and still is, measuring how quickly I can do that repeatedly. I was determined to excel in my neurological exam.

Now, I look back and laugh at my younger self. What was I thinking? I’m pretty sure I just wanted good news, and my way of trying to control that was to make those Os as quickly as I did the year before. (I’ve always seen my neurologist annually and also as needed.)

The good news I wanted was that, miraculously, I wouldn’t have Friedreich’s ataxia (FA). Somehow, acing (acing is my word, not that of any doctor I’ve ever had) my neurological exam would change that. I did get better at making those Os quickly, but I still had FA.

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The draw of magical thinking

That habit was magical thinking rearing its ugly head. Such thinking involves the belief that a person’s thoughts, actions, or rituals can influence outcomes in ways that defy logic.

Magical thinking, when it involves disease, can manifest in various ways. For instance, a person might believe that performing certain rituals or adhering to specific routines can directly affect their health. I did that when practicing elements of my neurology exam, driven by my desire to control the uncontrollable aspects of FA. You may not be shocked to learn that it didn’t work.

Many people with various diseases experience magical thinking. The allure of it persists despite people’s logical understanding that illnesses are influenced by biological factors beyond their control.

Hope for positive outcomes and fear of negative ones fuels magical thinking. Such beliefs can provide a temporary sense of control and comfort, even if they’re not grounded in scientific reality. The desire for good news and the hope that efforts can lead to a miraculous recovery are powerful motivators that drive individuals like me to engage in these practices.

While such thinking can offer temporary solace, it’s vital to rely on medical advice and evidence-based treatments for managing and coping with diseases effectively. Understanding the distinction between magical thinking and scientific reality is essential for making informed decisions about our health.

While I left my neurology appointment feeling like I’d aced those exams, I found myself disheartened because I was engaging in magical thinking. The information my neurologist provided about managing FA could’ve empowered me. Instead, I felt failure, helplessness, and anxiety. For me, magical thinking fostered a cycle of unrealistic expectations and resulting disappointments.

I recently went to my annual neurology appointment. (A quick aside: I, like many rare disease patients, travel six to seven hours to see the specialist I love, who has many FA patients and is significantly involved in FA research.) I didn’t practice for the exam because, after countless annual visits, I know practicing a skill that’s useless to my life — I don’t make the OK symbol that often! — won’t change whether I have FA.

Magical thinking is a powerful phenomenon. Be cautious of it and remember that neither you nor your loved one did anything wrong. Disease is part of humanity. You can manage FA by visiting your doctor as recommended, taking prescribed medications, exercising, maintaining a healthy diet, caring for your mental health, and more.

Finally, there’s no significant difference in my condition this year compared with last year. Whether that’s because of the new FA treatment Skyclarys (omaveloxolone) or my slow progression, we cannot determine. I’ll continue to engage in as many scientifically validated methods as possible. Furthermore, I’ll focus my hope for a cure by raising funds for research. That’s where I derive strength and a sense of control these days.

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.