How I Overcome Constant Worry About Life With Duchenne

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by Hawken Miller |

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Having Duchenne muscular dystrophy gives me plenty of things to worry about, like scheduling doctors’ appointments on time, not knowing when I might lose my ability to do certain actions, and using the bathroom when out with friends, because I know I’ll need help but will be too embarrassed to ask.

Myriad thoughts like these fly through my head every day. And that’s not to mention staying on track with articles and columns that I write for BioNews, the publisher of Muscular Dystrophy News Today, and for The Washington Post‘s video game section.

It’s easy to get overwhelmed when all my tasks and medical problems seem to be coming at me like bullets from a thousand rifles. My faith, discipline, ample sleep, and time outside of the house with friends all help me stay sane through the trials and tribulations of life with a rare, progressive neuromuscular disease.

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When You Live With Duchenne, Healthy Choices Are Vital

As a Christian, I believe in a sovereign, just, and good God who has a beautiful plan for my life. I understand that he has a hand in all things, and that I can lean on his infinite power when it feels like everything is falling apart. No matter what’s going on in my life, he’ll be there for me. That makes it easier to surmount the seemingly constant stress and worry in my life with Duchenne.

For my readers who don’t believe in God, there’s another pragmatic way of dealing with stress. Agonizing over things you can’t control has never shrunk a lengthy to-do list. For example, if I’m doing my stretching routine, I can’t also be writing. Doing the best at what’s in front of you is the best way to surmount anxiety about whatever’s hanging over your head.

What’s gotten me through some of the busiest moments in my life is focusing on one task at a time. Thinking about all the work I haven’t done won’t accomplish what’s right in front of me. I am by no means perfect at focusing on one thing at a time, but this mindset has gotten me out of some pretty rough mental spots.

If you’ve read my previous columns, you’ve likely heard me wax on about the importance of sleep. That’s too bad, because you’ll hear it again. When all else fails, a good night’s sleep can help put your problems into perspective in the morning. A new day brings another 12 hours to get after it — whether that be finishing a dreaded school assignment, cold-calling someone for work, or calling the pharmacy to refill medications. The less tired I am, the less likely I’ll feel like the sky is falling.

I will add, out of an abundance of caution, that if there’s something urgent you need to take care of, you might not have time for a full night’s rest. But if it can wait until the next day, then it’s worth giving into the base desires of your body to sleep. With a condition like Duchenne that makes every activity even harder, rest is all the more important. There is a reason, after all, why we feel tired in the first place.

Distracting and distancing myself from my worries has also been a healthy way for me to manage stress. If I’m playing video games or board games with my friends, I allow myself to laugh and release endorphins. These hormones are our body’s natural defense against stress. Taking a break can help me have a more positive frame of mind when I return to work. That doesn’t mean blissfully ignoring what’s on my plate, but rather giving myself a mental refresher.

It’s true that some days just seem way too difficult to handle. But the more I return to what I’ve learned about managing stress, worry, and a heavy workload in my short life with Duchenne, the more at peace I feel.


Note: Muscular Dystrophy 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 Muscular Dystrophy News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to muscular dystrophy.


Mary Jo Dailey avatar

Mary Jo Dailey

VERY wise words, especially by one so young. Thank you so much.


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