I try to keep FA from hijacking my health-related quality of life

I recently returned from a fun vacation with my husband, Dave, and two friends at the Grand Canyon and Las Vegas. We saw a lot, ate a lot, and laughed a lot. At this moment, my quality of life (QoL) feels great.

But that’s not the case all the time. Sometimes my QoL is rotten, such as when my debilitating fatigue won’t allow me the energy to do something I want to do, or when I experience difficult life events, like my mom’s death.

I also have the rare and chronic disease Friedreich’s ataxia (FA), which can be tough to manage. But while FA symptoms certainly affect my QoL, so do the realities all people face. Life, with or without FA, can be sunrise-in-the-Grand-Canyon amazing or death-of-my-beloved-mom devastating.

Recommended Reading

September 1, 2021 Columns by Matt Lafleur

How I Hiked Down the Grand Canyon in a Wheelchair

Assessing my health-related quality of life

Health-related quality of life (HRQoL) uses a combination of subjective and objective measurements to determine how symptoms or health issues are affecting one’s overall well-being. In other words, HRQoL is the patient’s perception of how their disease and its treatment affect their daily functioning.

Each year during my annual visit to the neurologist, I complete questionnaires designed to measure my HRQoL. These are part of an important FA natural history study I participate in. Answering the questions honestly enables me to help researchers understand how FA affects patients.

Medical providers treating FA patients need to understand that the condition adversely affects our HRQoL. Our quality of life largely depends on our perception, so a decline in perceived wellness can result in mental health concerns. But a perception that we’re powerless over our well-being can negatively affect our physical health, too. We may believe it’s pointless to exercise or eat right, for example.

Understanding these effects can help doctors provide better treatment. Your provider is more likely to offer mental health support, for instance, if they know your HRQoL is adversely affected by FA.

The difference my outlook can make

It’s important for me to understand that my attitude toward FA is a crucial component of my quality of life. I could choose to regret that many of the trails at Grand Canyon National Park weren’t accessible to wheelchair users, or I could choose to celebrate the beautiful sunset I saw there. The latter works for me.

I’ll share my point of view in an email to the National Park Service, advocating for more accessible trails, but my focus will be on what I gained from the trip, not on what I didn’t get to experience.

Hopefully, my feedback will make the park better for the next wheelchair user. I always think of the early advocates who worked to enforce the Americans with Disabilities Act of 1990, and how they made life better for me by ensuring that public places are, mostly, wheelchair-accessible. Helping others makes you feel better.

Sometimes filling out all those HRQoL surveys gets me focused on all that FA has robbed from me. But I can flip my outlook by remembering that I’m helping future FA patients get better care and treatment.

FA isn’t in my control, but how I choose to see it is. I know my HRQoL will be better if I don’t see myself as powerless. For me, that means exercising, eating healthy, going to the doctor, and helping fellow FA patients. Feeling empowered improves your QoL, FA or not.

Do I always get it right? No! Some days I’m overwhelmed and sad. But I give myself permission to feel that way, too, as I wouldn’t be healthy if I didn’t feel down sometimes.

My QoL is affected by many things big and small. But I can improve it by choosing, like my friend and fellow columnist Matt Lafleur, to celebrate life’s little wins.

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.