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Finding the Right Support Group When You Have SMA
As I’ve written about in my columns, I used to not really talk about having SMA, even with close friends. I think this is fairly common when you’re younger. When you’re a kid or teenager trying to fit in, the last thing you want to discuss is your disability.
Once I got older though, I realized that not talking about having SMA was having a negative effect on my mental health. By keeping serious issues bottled up inside, I was ignoring my well-being. I knew I needed to start being more open about the challenges of SMA and to connect with other people in the SMA community.
Today, I’m fortunate to have a strong support group of friends, family and online groups such as this one. In college I was active in a campus ministry, and my Bible study group was a big part of helping me through some difficult emotional experiences. I’m still friends with people from that group, and friends from the student newspaper that I worked for.
These days, I don’t see nearly as many people regularly as I did in college, but I still try to maintain an active social life. It’s more challenging with everyone having busy work schedules, but I manage. Also, in addition to having great online groups like the one here, I’m encouraged by how many of my friends and family members read my columns and respond to them. Even people I’ve known for years say that they learn a lot about my daily life and about SMA through reading my articles.
What about you all? What support systems do you have in place to help you with the mental and emotional effects of having SMA?
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