Putting My Challenges Into Words Lightens the Load

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by Sean Baumstark |

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I recently wrote about finding value in allowing myself time and mental energy to contemplate my reality, especially the hard parts. I don’t remember exactly how this initially came up for me, but it’s been on my mind a lot lately.

I’ve also begun to realize that there’s a ton of value in taking the time to put into words how things affect me, especially the challenges of disability and everything that comes with Friedreich’s ataxia (FA). Mental energy is one thing, but journaling and putting my thoughts to words have piqued my attention in a more significant way.

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Journaling Helped Me Document My FA Progression

In a recent episode of the Two Disabled Dudes podcast, my co-host, Kyle Bryant, asked me a series of questions that required me to describe certain aspects of FA, and the ways it impacts me physically, emotionally, and socially. The questions were all new and fresh for me, topics I had never spent much time considering or putting into words.

Somebody at work recently asked me to explain a 401(k), something I know and have always thought to be fairly simple, common knowledge. However, when asked to put it into words, I felt like I was fumbling to explain it. Another rare disease friend seemed to struggle in the same way when asked to explain their condition, which they’ve had for over 30 years.

I don’t think either instance represented a deficit. However, they certainly put into perspective the value of thinking about something, and then going a step further by putting it into words.

For the most part, I gave off-the-cuff responses to the questions Kyle asked me on our podcast. But over the last few weeks, I’ve been replaying some of my descriptions and explanations, and a part of me is trying to get them “just right.” I’m finding that as I get a handle on what resonates with me, what bothers me, and what weighs the heaviest on me, those burdens feel a little lighter, a little easier to lug around.

I may not know the psychology behind such exercises, and I have no idea if a professional counselor would even encourage this sort of thing. But I can’t help but think that it must be valuable, especially if the burdens of FA and my fading abilities seem easier to live with now.

I liken this to the exercises I employ when defining and tracking my goals — they have to be identified and clarified to be pursued. Perhaps identifying what is most frustrating or difficult about FA reduces the power those hardships have over my mental and emotional state.

I’m starting to believe my frustrations with FA must be identified in order for me to better harness the mental and emotional challenges associated with them, if even just by a little bit.


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.


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