The internet is a treasure trove for people living with a chronic illness. I have Chronic Fatigue Syndrome, and the internet has nourished me in ways I couldn't have imagined.
I'd been in exile for many years, too sick to read or type. Too sick to think. I was more fortunate than many with CFS. I had family around me, and a naturopath in Dr. Kelly Upcott who was treating me. But I had no contacts with my town or old friends. It was a crushingly lonely time.
Then my husband bought me a laptop and things began to change. Well, not right away. For the first week, I turned my computer on once a day. Checked the bank account, and my email. Nothing happening in either place. Then, I took a deep breath and began ... to write. Looked for work online. Started my website, ncubator.ca.
We people with CFS are an isolated bunch. Low on energy, we can't do much. Forgotten by the world around us, the thought of trying to get back in is daunting. The logistics take on mammoth proportions.
But if we can type a few moments a day, if we can think for a bit, we can send out our message in a bottle, asking "Is anyone out there?" We can tap the wall and listen for a response from another part of the cavern. And, by golly, responses ping back. It's like water for a person dying of thirst. Like air for a person suffocating.
Every chronic should have a computer. We use them for all kinds of things.
1) To make small talk
When you don't have the opportunity to chat with the store clerk, or the waitress who serves your lunch, or people in your office, you can't know the hole that absence of small talk leaves in a life.
One of the first things I did was join Facebook and find people I could make small talk with. Man, I needed it!
Talked about the kids, our hair, car troubles, something funny the dog did. I ate it up. I dished it out. It was the highlight of every day for as long as I could manage to think straight.
2) For friendships
I hadn't had friends in so long, I could hardly remember what it was like. But as relationships blossomed online, it all came back. I thrived on it. Was reassured by it.
See? I'm here. They can see me, they can hear me and ... maybe most important ... they respond to me. Just like a normal person.
3) For research
Lots of us receive no help from our doctors, many of whom know less about this condition than we do. Everything I learned in the early CFS years came from the internet.
4) To express ourselves
When you've gone a long time without being heard, with thoughts and feelings that overwhelm to the point of explosion with nowhere to go, and then you find the Internet ... It's life-changing.
I started writing for my website. I didn't really expect many people to read it, but the knowledge that someone might, and that I could say as much as I wanted about whatever I wanted was intoxicating. When I started getting responses from other people with CFS, I was hooked on this new drug, the Internet.
5) For solidarity
I'd been alone in my illness for years. My family cared deeply, but I knew no one else with CFS. Now, I was meeting all kinds of people with similar disabilities, similar problems, concerns, feelings. We were a community. Loneliness and isolation began to shrink.
6) To be a voice
Few CFS voices are heard outside the CFS ghetto. Many are needed to bring attention to the suffering. Bloggers and website writers are stepping up like the tiny citizens in Dr. Seuss' "Horton Hears a Who". And if we're plentiful enough, and loud enough, if we speak persuasively enough, if we can pique curiosity, we'll put a face -- many faces -- on this invisible illness.
7) To raise awareness
There's support from many directions for people with cancers, diabetes and heart disease. This is wonderful. But support is seriously lacking in the CFS ghetto.
We'd like people to be concerned about us. We'd like them to have walk-a-thons and bake sales. We'd like volunteers who actively care for people with CFS. Just a level playing field, that's all we want. It hasn't come yet. We'll keep talking, keep writing, keep putting a face on this disease.
8) To put pressure on the medical and research communities
To the uninitiated, this may sound harsh or extreme. Trust me. It's not. You should try it from our side of the non-relationship.
Some doctors and researchers have been there for us, and are there for us now. They're our champions and we love them. But generally, disillusionment and cynicism have scarred even the most naive and idealistic among us. We may have been that trusting before CFS. We aren't anymore.
9) For solace
Chronic illness is an ever-replenishing spring of grief and despair. To find others who understand, who do not become tired of us, makes it easier to bear.
10) For encouragement
I'll never forget how sick, helpless and vulnerable I was. I'll always remember the special terror that flourishes when hope and connection disappear. I'll always be grateful to the few who kindled a belief that I could have a future. Since I've been well enough to write again, I've tried to pass this hope on to others in that dark place.
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The Role of Online Support Communities
I spent 15 years losing the battle against Chronic Fatigue Syndrome. Three years ago, I found treatment that worked for me, and now I am making a comeback.
http://www.ncubator.ca and http://ncubator.ca/blogger
Add a Comment2 Comments
Thank you for sharing your experience with this condition, Anonymous. So many chronics have a similar struggle, and each person living in isolation who reads your words may perhaps feel not quite so alone.March 23, 2011 - 8:37pm
Thank you for writing this lovely piece. Life with CFS is indeed lonely. I've always said I have never been bored when by myself... only in the presence of others. (Actually, I became bored one day last fall after seven years of total disability.) However, connection is vital. You describe why so well. Thank you again. :)March 23, 2011 - 8:12pm