In recognition of Muscular Dystrophy Awareness Month in September, the Muscular Dystrophy Awareness Month campaign features a series of stories highlighting the real-life experiences of people affected by muscular dystrophy, written in their own words. Follow us on Facebook, Instagram, or X for more stories like this, using the hashtag #MDAwarenessMonth, or read the full series.
My journey with Becker muscular dystrophy started in my early 20s. I probably should have been diagnosed sooner, but I didn’t have a family history. As a child, I remember being one of the slowest runners in sports, though everyone thought I just wasn’t that athletic.
Until I finished college, my symptoms were minor, and I didn’t feel like I was living with a rare disease. Still, I knew something was wrong when climbing stairs without a railing became difficult. After mentioning this to my primary care physician, I was referred to a neurologist. A quick physical exam and a muscle biopsy confirmed I had Becker muscular dystrophy, a condition I had never heard of.
When I received my diagnosis, I struggled mentally and emotionally. I went into complete denial and foolishly thought I could hide my disease even though it was right there for anyone to see. My thought process at the time was: If I don’t talk about it, I won’t have to deal with it. I quickly learned that approach only works for so long.
I wish I had embraced my diagnosis and been part of the Becker and MD community from the start. Telling my story and meeting others going through this same journey have made me a much stronger person. I’ve come to learn that people living with MD are among the most determined and strong-willed. We don’t like being told what we cannot do, and many of us achieve things people said we never could.
Life with Becker is a physical and mental battle, especially given the slow disease progression most of us experience. The biggest challenge for me has been accepting the lifestyle changes that a progressive disease brings and trying to find new ways to live my life to the fullest. I try my best not to regret what I am no longer able to do, and instead embrace the things I am still able to do and control.
I know many people with neuromuscular diseases who are also parents. Raising children in this world can be challenging, and being a parent with a disability can be even harder. Despite the physical limitations you might face as a parent, you can still give your children so much. I believe that children who are brought up in this situation are more empathetic and understanding of the struggles many of us face.
Living with Becker muscular dystrophy is a journey, and it’s completely OK to have good days and bad days. If you’re living with a neuromuscular disease, try not to beat yourself up over the things you can’t control — and remember to be kind to yourself along the way.
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