My sense of style still shines through despite FA concessions

This morning, like many mornings before it, I pulled out gym clothes as my all-day outfit. Gym clothes are comfortable and easy to put on. I work out most days, so gym clothes are a reasonable choice.

This summer, I’m going for T-shirts and lightweight joggers. To me, that’s boring. I’m someone who enjoys a touch of embellishment, but the reality of the disease I have, Friedreich’s ataxia (FA), has pushed me toward practical clothes rather than ones I consider beautiful.

Because I have FA, I have poor coordination and use a wheelchair. My symptoms slow down my ability to dress myself, so I make clothing choices that can adapt to my needs. I also choose what I wear based on what looks good on my wheelchair-user self, since my wheelchair is part of how I present myself to the world. (Since I love gardening, my wheelchair is often dusty and not as presentable as I’d like it to be.)

On most days, a T-shirt I pull over my head and joggers I pull up fit the bill. If it’s cool, I throw on a hoodie. I usually wear earrings; I have small ones I leave in when sleeping and showering because they stay in place. Sometimes my husband swaps them out for me. I only wear bracelets strung on elastic and necklaces long enough to pull over my head. These embellishments I can put on myself.

Besides leaning toward practicality, I try to wear clothing that will be suitable all day. If changing isn’t an option, for instance, I look for pants that can last all day. Changing bottoms is the biggest hassle! I have to put on clean pants every day, and I can, but it’s not quick.

I try to avoid spending too much time on mundane tasks, so one change of pants is enough for the day. Long gone are the days of trying on multiple outfits before reaching that Goldilocks moment of finding that “just right” outfit for the day or event.

If I have a video meeting, you’ll probably see me in a nice top and some comfy bottoms.

Despite these considerations, I don’t believe that what I wear is the most important thing. Still, dressing is a way I express myself. My confidence gets a boost from an outfit I like, especially if I don’t have to fuss with it all day. Turns out, I’m not alone.

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Nice-looking, adaptive clothing helps people with disabilities

Adaptive clothing addresses the unique needs of people with disabilities. Thoughtful design elements — such as magnetic closures, adjustable fastenings, and seamless construction — make dressing easier and allow us to find designs that match our style.

A 2015 study published in the journal Disability and Rehabilitation found that people with disabilities who lack adaptive clothing may limit meaningful social interactions because they don’t have appropriate clothing. These researchers reported similar findings in a 2017 study published in the journal Applied Ergonomics.

When I choose clothing that not only fits my body in a wheelchair but also reflects my personality and boosts my self-esteem, I feel more confident. In addition, adaptive apparel often includes features that help me stay clean and comfortable, which means less fussing with my clothes during the day.

The rise of adaptive clothing lines — endorsed by major brands and showcased in fashion shows — indicates a growing cultural recognition of disability as an important part of diversity. This inclusion helps break down stigmas and barriers. Google adaptive clothing and you’re guaranteed to find something to buy. As I become more disabled, there’s more to think about when I shop for clothing — more to consider, but also more accessible options.

Tomorrow, as I surely put on gym clothes again, I’ll also be wearing something blue. Wearing blue is me. I’ll also likely be wearing my beloved high-tops.

FA has changed my style, but it hasn’t eliminated it. My style is another way I define myself.

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.