Knowing When to Share Information About Friedreich’s Ataxia

Knowing When to Share Information About Friedreich’s Ataxia
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One of the most difficult parts of using a mobility aid is unavoidably revealing that I am “not normal.” Since becoming dependent on my walker, I feel like I’m constantly broadcasting my most all-consuming source of fear and frustration to the world, regardless of my mood or the people I am around.

It is especially hard to be “the lady with the walker” when meeting new people. From a young age, we are told to put our best foot forward and make a good first impression. Unfortunately, I put my walker forward and leave the impression that something is wrong with me. This catches people off guard and makes simple introductions complicated and concerning.

Normally, when I am out and about, I kindly smile at passing strangers, then go about my day. They may wonder, “Why was that lady using a walker?”

Their questions don’t overly concern me because I will likely never see them again, and I don’t owe every single person I interact with an in-depth explanation of my disability, especially if they don’t ask. I just try to spread enough kindness to leave a positive impression of “the lady with the walker.”

Lately, introductions have become more complicated. I have met some new people, including neighbors, parents of my children’s classmates, and friends of friends, who will become regular fixtures in my life. When we meet, they see my walker, and I know they have questions.

At that point, I say, “I use this walker because I have a progressively degenerative disease called Friedreich’s ataxia (FA) that slowly takes away my ability to walk.”

I would rather share the light and relatable parts of my life, such as how old my children are, how long I’ve lived in Austin, Texas, and what I’ve been up to lately. I want to build a connection through common ground and not just be “the lady with the walker.” I don’t want every introduction to include a dissertation on the most depressing (yet interesting) part of my life. But I don’t want to be deceitful or ignore the elephant in the room. People in my life deserve to know about FA.

I know people will easily remember “that girl Kendall, with the walker,” because it’s not every day you meet a 33-year-old who depends on a mobility aid. Yet, I’d rather not taint their impression of me with sadness and concern by oversharing about my disease. Still, I don’t want to make people uncomfortable by not explaining why I use a walker.

It is obvious I am disabled. I use a walker, my speech is slow and slurred, and my back is not perfectly straight. What isn’t obvious is why. I haven’t yet figured out the best way to handle this predicament. I don’t think there is a universal answer to the timing of sharing information about FA.

What I do know is that FA is rare and complicated. Sharing all the details would be a lot of heavy information to dump on a relative stranger. I also know that most people are genuinely kind, and it is ultimately their choice how to process and digest information about FA.

I feel I will know when it is the right time to say, “Oh yeah, about the walker.” Or, people may feel comfortable enough to ask. Until that point, I aim to keep my introductions kind, light, and simple. I will remain an open book about FA, ready and willing to share with whoever wants to know.

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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.

Kendall is a wife and mother of two navigating life with Friedreich’s ataxia in Austin, Texas. She worked in marketing before “retiring” and becoming a stay-at-home-mom. She is an optimistic warrior fighting for a better future free of FA. She uses her column to help others process both the visible and invisible struggles that come with rare disease and disability.
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Kendall is a wife and mother of two navigating life with Friedreich’s ataxia in Austin, Texas. She worked in marketing before “retiring” and becoming a stay-at-home-mom. She is an optimistic warrior fighting for a better future free of FA. She uses her column to help others process both the visible and invisible struggles that come with rare disease and disability.

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