The Reasons Why I Share Our Rare Disease Story

Is it necessary to write about my family and three children with Duchenne muscular dystrophy (DMD)?

I have always felt that it is. However, sometimes, especially on social media, I am questioned and criticized when I share certain challenging aspects of life. “Why does she have to share that?” people wonder.

I assume that sometimes the reaction is defensive, sometimes it’s due to a misunderstanding, and other times it’s because of reasons I will never know. I don’t want to sound negative, as I am mostly met with support and kindness.

But the question about why I share so much has made me reflect on things as I head into the last week of the year.

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My family is rare. We are rare among other families living with DMD because we have a large family and three sons with DMD. It can be isolating to be different from everyone. So I share. In part, interacting with readers and other families living rare experiences fills a void and makes me feel less alone. That is about me.

But more important than me, when I share it helps others. A significant part of my life is my Catholic faith, which teaches about “charisms.” A charism is a spiritual gift of special abilities given by the Holy Spirit to be a channel of God’s goodness for people. Writing is a charism. In short, I feel like I’m called to use writing to share my life, my family’s experience with Duchenne, and every other aspect of it.

Last week, I posted on Facebook about the way my sons are noticed. They use wheelchairs, and my three boys are often together. People stare and point. I described those interactions to point out that they are noticed. But despite being seen, they are forgotten.

That could be a column for another day, but the reaction was overwhelming. Yes, someone asked why I had to share. But the rare and disabled community commented, shared, and told their own stories. It struck a chord. It gave a voice to something many have experienced. It empowered others.

Fellowship and learning

I love to read. I read a lot. I have no favorite genre and read every kind of book and story I come across. In my 42 years of reading, I have yet to come across a story that looks like mine. I know that is true for many rare families. I don’t think it is fair. Everyone deserves to see themselves represented, whether in a written story, a television show, or a movie. It is empowering to see someone like you.

So I share. Sometimes I feel alone. It is hard mothering children who unlike typically developing peers grow weaker and more dependent on me as they age. It is hard to know that my children could take their last breaths while their peers start families, careers, and the adult part of their lives. It is hard for me to talk about these things, but writing about them is natural. It’s therapeutic to get it all out there. I believe it helps others, too.

I’m not the only writer who shares a rare experience, and thank goodness. I love reading works from other parents who have children with a rare disease. I learn so much from them, and knowing that I am not the only mother that feels a certain way or reacts to bad news in a particular way makes me feel less isolated as I try to navigate this journey that Duchenne is taking my family on.

I also love reading things written by those living with a rare disease. The work Muscular Dystrophy News Today is doing in sharing rare experiences is changing how rare communities are seen. I’ve learned much from people living with rare diseases and sharing their experiences. It gives me insight into how my three sons with DMD might feel.

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.