Overcoming denial to build a full life with Becker MD
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Jon Bruns, on the right, his wife, Lynn, and daughter, Ava, enjoy attending plays. (Courtesy of Jon Bruns)
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.
