Mental health struggles are a part of living with Friedreich’s ataxia
Many mental health problems with FA have effective treatment options
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My husband, Dave, came home the other day to me screaming cuss words in the bathroom. This time, I was yelling at my bladder, which was threatening to explode before I could get to the toilet. Dave strode past the bathroom without greeting me, as he usually does.
These very unattractive episodes are one way I cope with living with Friedreich’s ataxia (FA). These “microfits,” as I call them, help. They let me feel my frustration, release that frustration, and move on. It’s a good pro-social way to express an emotion I often feel with FA, but once I’ve moved on, Dave and I get to laugh at the futility of me yelling at my bladder. Dave, my service dog, Wendy, and I know my microfits aren’t about the loved ones in my life; they’re about FA. Well, Wendy doesn’t know they’re about FA, but she does know they aren’t about her.
FA presents many mental health challenges. Clearly, anger and frustration are ever-present for me.
The mental health struggles of FA are real
While the physical manifestations of FA are well documented, the mental health implications are equally significant, yet often overlooked.
Research shows that chronic illnesses can increase rates of depression and anxiety. Uncertainty about disease progression, loss of autonomy, and the need for ongoing medical care contribute to emotional distress.
A study in the International Journal of Clinical and Health Psychology found that the presence of depression was higher in FA patients than in the general population, with 21% of FA patients showing moderate to severe depressive symptoms. For my part, I’ve dealt with significant bouts of depression that were triggered by some of the normal downs of life on top of FA, and have sought help for them.
Living with FA also often means living with anxiety. I work to take each moment as it comes. If I don’t, it’s easy to worry about what the future looks like. Luckily, my dad taught me early on to take things one day at a time, so 44 years after my diagnosis, I am fairly skilled, though not perfect, at doing this.
Routine support is vital. After my first visit to the counselor in the first decade after my diagnosis, I thought I was all set and wouldn’t need to go back. I’ve returned multiple times because that first visit taught me I didn’t have to live with overwhelming sadness and that even with FA, there is joy. I’ve had to make major and minor tweaks over the years since my diagnosis.
Addressing mental health in FA can involve a multidisciplinary approach that uses psychological counseling, support groups, medication, and tailored interventions to foster resilience and coping strategies. Your doctor should be able to connect you to resources. These mental health strategies are often different and individually tailored.
FA has profound effects on mental health. Recognizing, treating, and monitoring resulting psychological challenges is essential to improving and maintaining quality of life. May is both Mental Health Awareness Month and FA Awareness Month. They belong together.
Taking care of my mental health is vital to me. Today, I do a lot to help prevent major issues. This includes staying in touch with friends and family, meditating, exercising, and spending time outdoors, but if something big happens, I will seek professional help. The good news is that many of the mental health struggles patients with FA face have effective treatment options.
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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