Guest Voice: After diagnosis, focusing on what we can do
I must confront the future in a way most people my age don't have to do
Written by |
It started long before I had the words to explain it.
At 9 years old, I noticed small things: I struggled to lift my arms the same way as my friends, I grew tired more quickly, and others were much faster than me. But at that age, it was easy to brush those things off. Adults told me I was growing too fast or developing differently, which, for a long time, I believed.
However, I was always stuck with the feeling that something wasn’t right. I’d previously been progressing rapidly in sports, but now I was starting to fall behind. My muscles were changing, and little did I know that my life soon would be changing, too.
Over the next four years, appointments came and went, each one raising more questions than answers. It was frustrating, not just physically, but mentally as well. I didn’t understand what was happening to me, and neither did the people around me. Being in that in-between space where I knew something was wrong but didn’t yet have a name for it was incredibly isolating.
In March 2020, at age 13, I was finally diagnosed with facioscapulohumeral muscular dystrophy (FSHD).
Getting the diagnosis brought a strange mix of relief and fear. On one hand, I finally had an explanation. Doctors told me I was doing well for a 13-year-old with FSHD, and it would likely not impact me or my future. I was stoked and ready to continue living my life.
Unfortunately, as time went on and I started closing in on my teenage years, everything started to add up about FSHD: my arms not working, my legs becoming more fragile, being different from everyone. It became clear that I’d never again be who I was at 13.
Choosing what defines me
One of the hardest parts hasn’t been the physical changes, but rather how people see me. A shift happens when others notice that I’m different. Sometimes it’s subtle, like being underestimated or unintentionally excluded. Other times, it’s more obvious. Either way, it changes how I move through the world.
I’ve also had to give up many things I love, including karate, which I cherished and looked forward to every week. At 18, I got my black belt, and by the next year, I couldn’t continue. Life changed so quickly in such a short time.
After I gave up karate, I started listening to drum and bass music, which brought me a sense of happiness that I’d lost. I raved away for over a year, but at the age of 20, I had to ultimately rethink my choices. Standing for long periods, walking long distances, and keeping up with friends wasn’t simple. It felt like I’d lost another thing that had made me happy.
And then there’s the disease progression. My walking has deteriorated over time, which presents me with a difficult reality: If a cure isn’t found soon, one day, I may not be able to walk at all. That thought is heavy to me, and there’s no easy way to frame it. All of this forces me to confront the future in a way that most people my age don’t have to.
I’ve learned the importance of focusing on what I can do, even if that list changes. It doesn’t mean ignoring the hard parts. It just means not letting them define everything.
If there’s one thing I’d say to someone at the start of their own diagnosis journey, it’s to give yourself time to process things, adjust, and feel whatever comes up. There’s no right or wrong way to react to something like this.
Don’t be afraid to talk about it. The more we share our experiences, the less alone we all feel.
I didn’t choose this condition, but it’s part of my story now. While I can’t control how it progresses, I can control how I respond to it — and that, in its own way, is a kind of power.
To submit your own Guest Voice for publication on Muscular Dystrophy News, please email your idea to our columns manager at [email protected] with the following included in the subject line: “Guest Voice: Muscular Dystrophy News.”
Note: Muscular Dystrophy News Today 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 Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
Leave a comment
Fill in the required fields to post. Your email address will not be published.