I recently interviewed filmmaker Celestine Fraser on my podcast. Fraser produced a documentary about chronic illness called “ill, actually.” We touched on some interesting topics, including how people with chronic illnesses use social media.
The documentary interviews three people with disabilities about their use of social media.
The good and the bad of social media
I’ve found social media to be a mixed bag. When I was diagnosed with MS, my doctor told me to “find out what MS is for yourself.” (Yes, I rolled my eyes, too.) But during my research I found so many negative resources that I decided to start a positive group that acknowledges the bad times and accepts them for what they are.
Nowadays, groups exist for everyone. I feel the face of social media also is changing. Once a platform to connect with friends, among other things, the internet has become a vast network where anyone can belong. We have sites such as My MS Team and Shift.ms, where you can connect with other MS patients. Gone are the days of receiving a diagnosis and struggling to find someone your age.
But social media also brings judgment and speculation.
Challenging society’s views
In “ill, actually,” we hear from Thor look-alike Ben Mudge. Mudge, a bodybuilder, has cystic fibrosis. He documents life with CF on his Instagram and often posts pictures and videos of himself lifting weights.
Mudge believes that society puts people in a box: You’re either abled or disabled, he says. If you’re disabled, you shouldn’t lift weights. But disability isn’t always black and white. Disability includes many gray areas, those fluctuating conditions that others may never understand.
Some find it confusing that Mudge can do more than an average person in some ways, yet struggles in other ways. People often say to him, “I thought you were sick?” But you can’t tell how a person is feeling from a photograph or a two-minute video. Just because Mudge can lift weights doesn’t mean he’s lying. It means he’s trying to become the best version of himself. Is that not a good way to live?
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