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

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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Tags:

• Chronic Fatigue Syndrome
• Emotional Health
• Healthy Technology