It’s time to stop apologizing for being me and having FA

Today I fell getting out of bed and into my wheelchair. Don’t worry, reader, I didn’t get hurt. It was a slow-motion fall. However, I was then stuck on the floor.

Finally, after an hour of trying to get up, I called my husband, Dave. He works locally and is sometimes available to help me out. He came to my rescue.

But on top of the effort of trying to get up, it was a huge effort to not say “I’m sorry.” I didn’t want to be on the floor; it was my disease, Friedreich’s ataxia (FA), that had caused me to end up there. What would I be apologizing for? Being me?

I realized I wasn’t sorry, just grateful to not spend another minute on the floor.

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Why do I apologize so much?

The words “I’m sorry” pass through my lips too often. For me, being apologetic is part of how I deal with FA. I spend a lot of energy making sure people are comfortable with my disability. But does apologizing constantly actually help people feel comfortable around me, I wonder?

Dave frequently says, “What are you saying ‘sorry’ for?” It’s irritating to him that I apologize for being in the world. I apologize when I’m slow at the checkout counter at the grocery store, if I drop a menu at a restaurant, when customer service representatives can’t understand my slurred FA speech, and so on.

In my experience, over-apologizing can result in the opposite of what you intended: It makes people less inclined to spend time with you. People can feel the weight of you apologizing for being alive and the insecurity that often drives it. However, when you thank someone sincerely, they usually feel helpful. Everyone likes to be helpful! It gives us a sense of purpose and community.

Can being sorry all the time hold us back from feeling grateful? I think sometimes it does. In the case of my struggles with FA, I’ll worry so much about being a burden and needing to apologize for it that I can’t appreciate the help I get. My focus is on my perceived inadequacies rather than on how many people love me and are there for me.

I started experiencing FA symptoms about 45 years ago, and I was diagnosed 41 years ago. I’ve been apologizing for having a disease since I became symptomatic, which is way too long. Only in the past several years have I become aware of how often I say I’m sorry. I need not apologize for being me, and part of being me is having FA.

I like to set intentions every day. My intentions are not my goals but my processes and how I’ll act each day. So today, I intend to stop apologizing for being myself  (that butthead move getting out of bed, though, mea culpa) and to be grateful for all the help I receive.

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.