Having a rare disease is not an easy life. I have limb-girdle muscular dystrophy, so in addition to the physical decline of my body, I also need to be hyperaware of my mental health. I don’t think humans were hardwired to adjust to life on their own with a condition like muscular dystrophy.
So what’s a good coping strategy? For me, it’s seeking out other people who also live with a rare disease. We can share stories and tips and talk about what makes us get out of bed each day. We can be present for one another and have uplifting conversations while also listening, which helps us to learn, understand, and grow.
That’s what it means to be part of a community. I’ve written before about the importance of finding my own community with people who have different types of muscular dystrophy. I also take comfort in knowing that I belong to several communities centered on rare disease in general.
When I began writing for Bionews, the parent company of this website, in August 2024, I approached it as a way to express to others what life is like through my eyes. Because Bionews focuses on rare conditions, I believed I’d be writing and sharing in a safe environment, and that my words would be read by people who understood what rare disease life is like. I was encouraged to write freely.
What I wasn’t prepared for was the deepening bond that the Bionews community would offer me. The company is a network of many people who live with rare diseases, as well as caregivers. Behind the scenes, I’ve established friendships and improved my messaging by allowing others to help me shape what I’m trying to say. In short, I’ve found another strong community bonded by our shared knowledge of chronic illness.
With that in mind, I’m proud to announce that Bionews is relaunching the Muscular Dystrophy News Today Forums. These online spaces offer all of us the opportunity to connect, share, and discuss aspects of life in a supportive environment. Forum topics range from durable medical gear to dating and relationships, and more.
I’ll be moderating forum discussions and posting conversation topics throughout the space to encourage discussion. I kindly ask that you join if you are living with muscular dystrophy or are a caregiver. We don’t always need to talk about the hard parts of our disease, though. We can also celebrate all the great stuff that makes life fulfilling.
Communities function best when people are actively involved, so if you want to share your voice, please join the forums and we’ll talk about life, liberty, and front-row parking! (OK, I had to throw a joke in there.) See you in the forums!
Note: Muscular Dystrophy News 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 or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
The post Looking for community? Join us in the muscular dystrophy forums. appeared first on Muscular Dystrophy News.