My FSHD journey revealed new strength I never knew I had
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Alena Jones is seated in front of the glass of a large aquarium while vacationing in Spain in June 2025. (Photos courtesy of Alena Jones)
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.
When people hear the words “muscular dystrophy,” they often imagine everything a person has lost. What they don’t see is everything we continue to do.
Living with facioscapulohumeral muscular dystrophy (FSHD) has changed my life in countless ways. It has made me think differently about everyday activities that many people take for granted. Simple things like climbing stairs, walking long distances, or carrying heavy bags require planning, pacing, and sometimes accepting help. Those adjustments haven’t always been easy, especially when my body can’t keep up with what my mind wants to do.
For a long time, I worried that FSHD would define me. I wondered whether employers, friends, or even strangers would only see my disability instead of who I am. Over time, I’ve realized that while FSHD is part of my story, it isn’t the whole story.
I’ve continued to pursue my interests and ambitions, even when they require a different approach. Whether I’m preparing for interviews, learning new skills, or simply enjoying time with friends and family, I’ve learned that success doesn’t always mean doing things the same way as everyone else. Sometimes it means finding your own way to reach the same destination.
Jones attends the Boomtown Fair in August 2025.
One of the biggest lessons FSHD has taught me is resilience. On frustrating days, my muscles feel weaker, fatigue takes over, or I must change my plans. Those moments are real, and acknowledging them matters. But I’ve also discovered a strength I didn’t know I had. Every challenge I’ve faced has taught me patience, determination, and the importance of celebrating progress, no matter how small.
Connecting with others in the muscular dystrophy community has also reminded me that none of us is alone. Every person has a different experience, but we share an understanding that can be difficult to explain to those who haven’t lived it. Hearing other people’s stories has encouraged me to keep moving forward, and I hope that by sharing mine, others feel a little less isolated.
If there’s one thing I want people to take away from my story, it’s that a diagnosis doesn’t erase dreams. We may have to adapt, ask for support, or take a different route, but we can still build meaningful, fulfilling lives. FSHD has shaped me, but it hasn’t defined my future. I’m still learning, still growing, and still looking ahead with hope.
