“It helps to share experiences with others who understand what I am going through.”
Jill Price, a mom with Charcot-Marie-Tooth Disease talks about how social media has helped create a community for people dealing with the condition. Its helped to bring patients together, allowing them to share their experiences with one another. By talking about their struggles they are able to learn what coping mechanisms have worked for others and find new ones to try for themselves. The online community also shows individuals living with the disease that they’re not alone in their struggle.
Jill says that’s the thing that was the most difficult for her growing up with the condition- she thought she and her family members were the only ones in the world living with it. Numerous times in her life she’s had to explain the disease to people because so few are even aware of its existence. She’s explained it to friends, teachers, and even some of her doctors. As a child, she figured this lack of knowledge was normal. But as she’s gotten older, she’s realized how crazy it is that so many medical professionals have never even heard of the condition.
Now raising a son who has the condition, Jill takes extra care to make sure he understands that he’s not the only person in the world with the disease. There are other people out there who understand what he has to deal with. Jill says that she thinks understanding she wasn’t alone in her illness would have helped her a lot growing up. There’s something truly comforting about knowing you’re not alone and something incredibly special about being able to talk to people who really get what you’re going through.
You can read more about Jill’s story and her perspective on community here.
