What happens when I face the fear of missing out because of FA

Guilt is a plight of the human condition that comes in many forms. I wrestle with it often. One common form, for example, is “mom guilt,” a topic that inspires countless books, articles, social media posts, texts among friends, and so on.

I grapple with mom guilt almost daily. “Was I too strict about that?” “I should’ve spent more time working on that.” “I can’t believe I said that.” I hear such statements in a highlight reel, or perhaps more aptly named a blooper reel, of parenting mistakes, and it keeps me up many nights.

I’ve noticed that as my Friedreich’s ataxia (FA) symptoms progress, demanding more adaptations, I can add that variety of guilt to my nightly replays.

Most of us have heard of FOMO, the fear of missing out, and been subject to it. My FOMO has lately included FA-related feelings, causing a helping of guilt.

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A possible minefield of daily choices

For example, I recently decided to miss a social function for my children’s school. It was the fourth function that week, and I had obligations the following day, plus a weekend full of youth sports. I made a spur-of-the-moment decision to stay home, let my body rest, and get mentally and physically organized for the weekend.

After about 15 minutes, I deeply regretted my decision. But it was too late to get dressed and get across town in time.

I didn’t, however, make the decision lightly. As someone who tends to overthink, I’d thought about it a lot. Many factors contributed to my choice to miss the event.

For starters, the function was at an acquaintance’s house that I hadn’t visited before, which brings on my logistical anxiety. What if the house has stairs to get into it? What if the driveway is steep or full of loose gravel, which my walker can’t maneuver well? Then I have to consider the energy required to do what I’ll have to do, physically and safely, at the event. Will I have to stand or walk a lot?

Then I had to think of the emotional cost. I knew that I’d never met a lot of the people attending, and I always have to prepare mentally to have my disability on display for strangers. What questions will people ask? What impression will I make? What will the host feel about accommodating someone with different needs?

In the end, I decided that those variables outweighed the benefits of attending, which weren’t guaranteed, anyhow. Still, I regretted not going. The part of me that isn’t centered on FA wishes that I’d been able to separate from the disabled part of my identity and consider how much fun it could’ve been to make new friends.

I realized that FA is forcing me to choose between my needs and my desires. I think that’s an unexpected yet unavoidable part of becoming progressively physically disabled. Although I’m proud that I prioritized my physical health and safety, I can’t help but regret that I was forced to do that because of FA.

I wish that I wasn’t physically affected by FA on nearly an hourly basis, but I am. Therefore, I need to continue factoring in FA when I consider social commitments and deal with the FOMO and guilt as they come. As with every unpleasant feeling, soothing it will take some practice. But I know that I can do hard things.

“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, New Living Translation

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.