On Duchenne Awareness Day, Tomasz explains his journey with Duchenne muscular dystrophy, including the power of a positive mindset and the benefits of saying things out loud.
Speaking hope into the hardship: my journey with DMD, mental health, and the quiet strength of prayer
Living with Duchenne muscular dystrophy is difficult, yes and it is a day-to-day struggle. Yet happiness and purpose are things that abstract us from the physical. The key is choosing not to dwell only on the hardship, but to go out and show people that although you are different, you can be happy and have a future. Keep doing the things that matter to you.
For me, that strength comes through prayer and my Catholic faith in Jesus, speaking my sorrows honestly and trusting I am not alone. Even if prayer is not part of your life, simply saying the hard things out loud and asking for help can open the same door. This is the heart of my journey: living with hope, faith and happiness in the middle of difficulty.
DMD is not just a muscle condition.
I’ve lived with Duchenne muscular dystrophy for 19 years.
Most days I don’t think about it much. I’ve learned that if I spend even an hour dwelling on my problems, I end up sad and loose hope . So instead, I run a quick check.
Can I speak? Check.
Can I see? Check.
Can I breathe? Check.
Can I learn? Check.
That last one is the one that keeps me going. Being curious about everything and everyone.
I know it’s easy to say all this from a positive mindset, and I’m not pretending I don’t have down days. I do. But there’s always something you can still do. Computers have completely changed what’s possible. You can work online, connect with people, talk about your interests, make animations. Find something you actually enjoy, and the rest tends to find its place.
For me, faith matters too. Prayer, and asking for help. Even if you’re not sure you believe, sometimes just talking things out that way makes you feel lighter.
But what I really want to talk about is the part people don’t see.
“When people hear DMD, they think muscle wasting. They assume everything upstairs is fine, that the physical and the mental are separate. They’re not.”
I recently learned that dystrophin, the protein missing in DMD, isn’t only found in muscle. Different types of dystrophin are found in the brain too.
Researchers are still learning exactly what that means, but it seems that dystrophin plays a role in how brain cells communicate with each other. One area scientists are looking at is its relationship with GABA receptors, which are involved in helping regulate and balance brain activity.
When I read about that, a few things started to make more sense. Things like emotional regulation, OCD traits, sleep problems, working memory and needing to be reminded of small things over and over.
“And here’s the important part: this isn’t degenerative. The dystrophin was never there to begin with, so the brain simply adapted and built itself differently. It’s not getting worse. It’s just how it’s wired.
I’m sharing this because I think it might reassure someone. If you’ve been struggling with this and thought it was just you, it isn’t.
This is something I deal with myself. My head gets so crowded with thoughts that my own inner voice gets drowned out. It’s hard to describe, and it isn’t talked about much, but I doubt I’m the only one. It seems to come up more in the late teens and twenties.
“Keep your mind on a goal, however small. Do the exercise you don’t feel like doing. Say something kind to someone.”
Do what you love. Games? Go for it. A good book? Brilliant. Want to stream? Get out there.
Meet people. Leave the house now and then. Go for a nice drive in your chair with family or friends. Everyone else gets too tired. Can’t happen to me ( I’m four tyred).
Keep your head up. Be brave. Be happy. Don’t let the minor inconvenience of DMD hold you back.
Learn more about Duchenne muscular dystrophy
