The Reasons Why I Share Our Rare Disease Story
Writing about rare disease is therapeutic; most importantly, it helps others
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.
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.
Hi! I'm so glad to find out about your story! I am the step-mom to my husband's two boys that have Duchenne Muscular Dystrophy. These two boys live with us. In all there were five boys with the diagnoses and then another son and two daughters who are carriers. (I have seven grown children on my own.) The second son of my husband's children passed away in 2015, right before he and I were married. The oldest then passed away in 2018 and then the third to the youngest (who used to live with us as well) passed away in 2020. The youngest two are 17 and 15. I would love to talk about differences and similarities. I love to hear what you have to say.
Thank you for sharing your stories. They are always so well written and inspiring. I have yet to post a comment on how I enjoy reading them, however this story has touched me more than usual. I have a late onset form of muscular dystrophy called OPMD. It is a slow progressive disease, effecting eyes, face, swallowing, and muscle weakness in arms and legs. I was diagnosed 8 years ago at 55 and am living in this prison of a body that is wasting away. I have two amazing daughters that are both married. One of them lives with me, along with her husband and my 2 grandchildren. While I am still somewhat independent, getting up from a chair, walking up and downstairs is nearly impossible without aid. I never dreamed this would happen as I was blessed to live a very athletic life. I don't want my children to take care of me as this worsens. Who could imagine this? A mother should take care of her children. I too am a Catholic and my sister says that this is my purgatory. Are all people with this disease in purgatory and their caregivers? I do feel that the people that love us and help us have a special place in God's eyes. Their own special door that will open, for you and people like you that show us love and take care of us daily. I wouldn't wish this disease on anyone; however, I pray every day for God's grace not to be a burden and be thankful for the blessings I have. My God continue to bless you and your family. Your writing is a charism. you are touching more lives that you realize. Be well.