I’m Learning to Be More Open About My Needs

I made my friend from childhood wait while I put on my ankle-foot orthoses (AFOs). We had just finished eating our eggs and toast at a fancy breakfast place, but we hadn’t seen each other in three years, so we still had some catching up to do. My friend suggested we go for a walk. For that, I knew I’d need my AFOs.

Earlier in my life, I probably would’ve fretted about this. But that day, I noticed a small change in myself. Progress, perhaps?

It’s becoming easier for me not to care as much as I used to about trivial things, like being embarrassed by my AFOs. I don’t mind asking others for grace when simple tasks take me longer.

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In the past, I might’ve thought the right move would be to make up an excuse to avoid walking. Even now, part of me feels like I’m being an inconvenience to others by making them wait for me. Another part is simply embarrassed to reveal that I need AFOs to walk a few blocks with confidence.

I’ve often been self-conscious and tried to keep my Charcot-Marie-Tooth (CMT) symptoms invisible. But I’m realizing that maybe I was too concerned about it. Most people, especially my closest friends, really don’t care that much and are willing to wait for me. I’m not actually inconveniencing them.

I’m trying to be better about putting on my AFOs when I need them, and I’ll make other people wait for me if necessary. I’m also learning to be more open about my limitations, whether they’re related to movement, stamina, or grip strength.

Besides, it turns out that I wasn’t very good at hiding my limitations anyway. I have observant friends.

All of this reminds me that my worth isn’t determined by physical abilities, and that close friends are happy to make accommodations. It’s important to live authentically and value everything that makes each of us unique.

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Note: Charcot-Marie-Tooth 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 other 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 Charcot-Marie-Tooth News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.