Personal Story: CFS Blogger Jo of Hidden Words

Through Jo’s web log Hidden Words, she stays connected with others and shares her experiences of CFS and life.

I first became unwell in October 2000, but I wasn’t diagnosed with CFS/ME until early in 2002. At that time I’d just turned 21. I was housebound and had lost my job, my boyfriend and many friends and was quite depressed because of my situation. I was shut off from the world outside my window and didn’t really understand much about this condition at all. It wasn’t until I purchased a computer in June 2002 that I started to use the Internet to learn more about CFS and all it encompassed.

I first discovered a blog (short for “web log,” a form of online communication through journal-type messages on a website) owned by an American woman with CFS when searching for information on the illness. It was such a relief to know that somewhere ”out there” someone knew how I was feeling and could relate to the isolation, uncertainty and sheer frustration I woke up with every day.

I e-mailed the blog’s owner to thank her for being so open and honest about her illness and the effect it had on her life, and to let her know how much she’d helped me just by writing about her experiences. Over the next couple of months we e-mailed each other regularly, and one day she asked me if I’d ever considered writing about my own journey. Initially I had my doubts, but a few weeks later I decided to try writing a blog of my own.

For me, blogging isn’t just about churning out posts about my life, my illness and my thoughts. I’ve met some inspiring people and I’ve made some amazing new friends. I learn so much from other sufferers around the world about the latest research, medical trials and the differences in the way people with CFS are treated by the medical profession and society in general. In a way, I feel there’s a certain camaraderie between bloggers with CFS around the world. Most of us have common goals: to change the perception of how sufferers are seen, to fight for further research and ultimately a treatment or cure, and to regain some kind of normalcy and control over our lives.

From a personal point of view, I’ve found blogging helps me enormously. I’ve gained quite a few tips for managing my illness better. I have a great support network made up of fellow patients and others who choose to write online.

I’ve found blogging has helped me in terms of my energy levels too. Family and ”real-world” friends will often check out my blog to hear my news, keep up-to-date with how things went at hospital appointments, or just to see how I’m getting on in general. I’m lucky that these days, the people around me have come to understand that I find speaking on the phone quite difficult, meeting with people face-to-face exhausting and spending a lot of time on the computer quite draining, and so this is an alternative which works well for us.

Some people may never understand why some choose to write publicly online instead of in a paper journal. Most bloggers say they write for themselves and not an audience, even if they have regular visitors to their sites. That is true for me too. Even if nobody read what I had to say, I’d still keep blogging. But in the meantime if I’ve helped one person truly understand that CFS isn’t just about being tired and that it literally robs you of your life, or if someone discovers my site and finds it helps them feel less alone—just like I felt when I discovered that young American’s blog—I’ll be a happy lady.

Visit Jo’s blog Hidden Words at http://www.hiddenwords.net/ .

[Editor’s Note: Jo and other bloggers will be featured in the upcoming summer issue of the CFIDS Chronicle in a story profiling the emergence of CFS blog sites. Though some with CFS cannot tolerate computers or do not have access to the Internet, many others are finding benefits from blogging. To learn more about this trend in CFS networking and information sharing, check out the summer issue of the CFIDS Chronicle this August.]