Building and maintaining friendships is an intentional act

Each year, the daughter of one of my friends hosts an annual “Friendsgiving” event the day after Thanksgiving. I’ve never gone because I haven’t met her daughter, but my friend assures me it’s really fun. I love the idea because it reminds me how intentional people must be to build and maintain friendships. This is especially true for those of us with a rare disease.

Experts note that the emotional and physical demands of managing a rare disease can leave little energy for social activities, making it harder to nurture friendships. Over time, these challenges can lead to feelings of loneliness and exclusion. This can turn the process of building and maintaining friendships into an uphill battle.

Able-bodied friends have ghosted me before. Although it’s been about 15 years since that happened, it still hurts. I’ve since learned how to manage the pain.

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Sometimes there are hang-ups

With Friedreich’s ataxia (FA), I find that fatigue is a major obstacle to maintaining friendships. It’s difficult to explain my fatigue to others. I try to manage how much energy I use. For example, if I plan to go out with friends one evening, I won’t spend hours in my garden beforehand. This approach is called the “spoon theory.” Sometimes I end up too exhausted, even after trying to manage my fatigue, and I have to cancel plans with friends.

Most of my friends have a basic understanding of mitochondria. When I tell them that people with FA don’t produce enough of the protein frataxin, which is needed in every cell of the body, they get why I’m tired.

The progressive nature of FA can be tough on long-term friendships. I can no longer do some activities that weren’t a problem 10 years ago. I need to be clear about what’s doable right now, and I often end up inviting people over to my house. Some of them feel like they’re imposing when they visit. I assure them that isn’t the case. I remind them that there’s always takeout food, and they came to see me, not to inspect the cleanliness of my home. I’m always here to laugh and cry with friends!

People also sometimes get stuck on the fact that I use a wheelchair. They might feel uncomfortable because their home or the place we want to go isn’t wheelchair-accessible, or they might worry about being my temporary caregiver.

I tell folks that they don’t need to host me to be my friend. Thanks to the Americans with Disabilities Act, many places are now accessible. I can figure it out or tell them what to look for. If they want to go somewhere inaccessible, they should go without me and I won’t be upset. However, I will be upset if people don’t visit because I’m unable to go to certain places.

Regarding the concerns about being my caregiver, I let people know what I need, which often isn’t anything at all.

My friends with FA understand all of this. If you have FA but don’t have any FA friends, I recommend attending a Friedreich’s Ataxia Research Alliance event or one of the monthly online hangouts. If you find your community, I’m confident that friends will follow.

With all of this said, I’m considering having Friendsgiving in July, because it sounds like fun, and I’ll have the energy to do it. In the meantime, we’re fortunate to live at a time when we can stay connected via texting and video calls.

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.