Honestly, when I started this blog, I’d never read a blog before. I knew what they were, but I had never looked one up or come across one. I didn’t have time to check my personal email account or read my magazine subscriptions, let alone peruse blogs for fun.
It never occurred to me that there would be so many people with ME/CFS writing blogs. That never crossed my mind. I didn’t get sick and start looking for personal stories of survival on blogs. I got sick and started researching the CDC and WHO and MedScape and the Mayo Clinic. As I continued to write, I would get a comment here and there and think, “Wow, there’s someone else writing a blog about this very same hell in Australia.” It’s like Twitter ~ if you’re not part of that world (and I’m not), you just don’t really get it. I’m discovering how vast this community is and it amazes me. There are so many of us, housebound, bedbound, reaching out in one of the only ways we can. How is it that most people don’t know all about this disease??
I started writing because I wanted to track my days on low-dose naltrexone. I quickly realised what a relief it was to answer friends’ and family members’ questions with my posts rather than trying to keep up with emails or tackle phone calls, which exhausted me even when I wasn’t sick. Then this blog became therapeutic and it became invaluable for me to witness my own trajectory. But, I am gobsmacked at how many blogs I come across that write the exact same things that I have: How my illness began. What has helped. What I wish I had known. How the medical community has failed me. We may start to tell our stories in isolation, but, the more you look, the more you realise that this community is conducting its own researching, being our own doctors. We are all out here, figuring it out ourselves, informing one another through forums and websites and blogs. You know those drug print-outs that you get from the pharmacy? We do that for each other: You might want to try this drug. Start at this dose. Look for these side effects. Try these two things in combination. Try taking this one at night. Here are the Safe Doctors… Hundreds of us, thousands. And there are millions more out there not connected to these resources, suffering in silence.
What keeps nagging at me is, if someone gathered all these blog sites together and sent them all to someone and that someone spent a week reading these uncannily similar stories, that they would drop everything and make something happen. I know that’s a lot of “someone”s and “something”s. I don’t really know what I mean. Maybe the president drops everything and makes ME/CFS a huge research priority. Maybe an amazing doctor with lots of connections and endless time who lives very close to me decides to stop everything she is doing and focus all her efforts on mastering this disease. Maybe Bill Gates or somebody else very rich puts together an elite superhero team of scientific minds that he pays forever to do nothing but figure out a cure. Or maybe the money goes towards helping every patient afford their mortgage, food, home care, medicine… If somebody powerful/influential/rich read all of our stories, I am sure they would stop doing whatever they do in life and dedicate all their resources to doing something to help us. Right?
On the right-hand side of her site, No Poster Girl
has a Blogroll: a list of ME/CFS blogs. I haven’t read any of them and I thought I’d read a lot.