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Social Media: An Open Window Into the World for ME/CFS

By HERWriter
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social media is a window to the world for ME/CFS David Castillo Dominici/PhotoSpin

I have ME/CFS, a pernicious and limiting condition that's shared by throngs of people around the world. ME/CFS stands for myalgic encephalomyelitis and chronic fatigue syndrome and it is an illness that causes multi-system breakdowns in the body.

Little research has been done on this condition and little help is out there in the medical community.

When I first became ill there was no social media. I was lucky to have my family around me, because I had no contact with anyone else. Even with my family, life was pretty lonely. The isolation was crushing. I spent years this way.

Five years ago, my husband gave me a laptop and I found Facebook. I spent several weeks trying to think of anyone who'd ever been in my life -- relatives I hardly knew, kids I'd known in school. I sent off as many friend requests as I could come up with.

At around that time I discovered some support groups and forums for people with ME/CFS and though I'd never been much of a joiner before, I was desperate for contact, especially with people in similar straits who could understand what I was dealing with.

In a matter of weeks, I had a big new community of friends that astounded me. I'd had friends before I got sick, and to feel a part of something again helped me to regain part of who I had once been and feared I would never be again.

The fact that none of them lived nearby and that the only form of contact was via my keyboard was probably a good thing. It was likely the only way I could have been in touch with anyone since spending time in a room with other people exhausted me and sent me into sensory overload very quickly.

But online communication was something that I could pick up and put down depending on whether I was up to it at the time.

When I was in a crash and unable to think or navigate or breathe properly, I knew my friends would be waiting for me. If they knew I'd crashed they'd send me encouraging messages as I would do for them, and those messages would be waiting for me.

Later I also joined Google + and Twitter. Though my life was far from normal, it felt more normal because I no longer felt so alone and invisible.

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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.

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