Breaking free from vicious mood cycling with Friedreich’s ataxia

For the sake of my mental health, I'm finding a way to focus on the positives

Kendall Harvey avatar

by Kendall Harvey |

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When I was diagnosed with Friedreich’s ataxia (FA), I was obsessed with gathering research and other information to arm myself with anything that might prepare me or give me a slight advantage as I attempted to combat what the disease would do to my body. Although I can knowledgeably say that reading about FA pales in comparison to experiencing it, I now feel somewhat adept at handling the physical obstacles it throws my way.

Yet nothing prepared me for the vicious effects FA has had on my mental and emotional health. Even though I’m more than a decade into my lifelong battle, I still feel ill-equipped to face FA at times.

FA-centered frustrations can kick off some of my most unshakeable bad moods. Those frustrations can be as small as feeling left out when most of my friends have a lively conversation about a group class at the gym, encouraging my children to do something fun and fearless that I can no longer do, or falling and slamming my hip into the counter while sauteing chicken for a family dinner. All of these experiences, even though I anticipated them physically, can leave me reeling emotionally for weeks.

These limitations and their effects on my life are upsetting. This sad and inconvenient truth — that I can’t do this or relate to that — eats away at my resolve to be thankful for the blessings and abilities that I do still have. I become tempted to focus on the negative and allow that to dominate. But the vicious cycle that follows is heartbreaking.

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How the cycle gets its hooks in me

It goes like this: I let my FA frustrations put me in a bad mood, and then I’m mad when I realize I’m in a bad mood, all the while cursing my situation. But I can’t seem to snap out of it because there’s no end in sight to any of these issues, which just refuels my frustrations about FA and how it affects my life.

It’s almost as if I’m having an out-of-body experience and can see how my bad mood is affecting me, yet I still can’t manage to shift my focus or change to a more positive mood. That makes me think, “I can’t believe FA is ruining things for me again” — which tends to make me even more frustrated.

I haven’t yet figured out how to end these cycles quickly or with minimal damage, but I am working on it. Instead of just being incredulous and judging myself for being mentally or emotionally weak, I’m trying to do what I did at the beginning of my FA journey: arm myself with information to combat my disease. I need to get introspective and view these cycles with curiosity and without judgment.

Unfortunately, I can’t point to an “aha!” moment that’s effectively snapped me out of my pouty funk every time, but I think a combination of steps has helped.

For starters, no matter how introverted I’m tempted to act, I “fake it till I make it.” I keep showing up and trying. I know that staying in bed all day, doing nothing, and ignoring everything and everyone won’t work with the fulfilling life I’ve built, so I drag myself out of bed, get the kids off to school, and start my day. I exercise. I keep up with laundry, dishes, grocery shopping, and other domestic tasks. I check in with my friends. I go to scheduled activities and smile through small talk.

I also intentionally stop internalizing and analyzing every little thing. I don’t allow myself to finish the “Man, if only I didn’t have FA” thoughts. I make a point of reviewing the good points of my day when I’m getting ready for bed. Through it all, I find that the good can begin to outweigh the bad. The smiles and small talk seem less forced. I feel less tired. I don’t feel the pull to retreat to my bed as strongly. And eventually, I feel like myself again.

Although I’ll never stop wishing I didn’t have to endure the disease, I remain proud of how I’ve handled most of my days with it and I’m hopeful for the future — with or without FA.

“Pay careful attention to your own work, for then you will get the satisfaction of a job well done, and you won’t need to compare yourself to anyone else. For we are each responsible for our own conduct.” — Galatians 6:4-5 (NLT)

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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