I had something of an epiphany this week. I was reading a blog post on Six Hips and Counting about the blogger’s experience of living with rheumatoid arthritis, and I identified with absolutely everything she said. I know, I don’t have rheumatoid arthritis, but her emotions were just like mine.
I then went on a massive online search for good blogs that address fibromyalgia, chronic pain and other invisible illnesses. Do you know what I learnt? There’s a lot of crap on the internet. I imagine you knew that already, but I couldn’t believe how many poor blogs and forums I came across.
Now, not everyone is writing a blog for millions of people. Not everyone wants Jo Public to think they’re leading the way with patient support. Some people write for their own pleasure or as part of their coping strategy, and I doubt they care what I think of their lime green home page and Comic Sans font. And to be quite honest, good for them. (Except for the Comic Sans bit.)
Struggling to find a good number of brilliant blogs taught me a few things.
Firstly, I am not saying that my blog is beautiful nor well written but I suddenly feel an immense amount of pressure to make sure that my blog improves every day and is as good as it can possibly be. It’s so important to me that the stuff pouring out of my gut and on to your screens (wow – that does not make for a pretty image) is useful or informative or heartfelt or humorous. Or vaguely interesting, at the very least.
Secondly, there should be a rubber stamp or central site that recommends blogs. Does that already exist? Is there are a criteria that means someone else’s blog is better than mine? If not, maybe there should be. I don’t want to start pitting bloggers against each other, certainly not in the field of patient care when every day survival is at the core of our blog content, but if I was diagnosed with a chronic illness today and wanted to find real peer support blogs, I would have to scroll through a lot of links before stumbling across something I liked. The problem with this, I know, is that ‘a good blog’ is a very subjective term. My favourite blog might be something you detest, and vice versa. Often my favourite blogs are the ones where I really identify with the blogger’s voice, and it can take a long time to find someone who is vocalising your thoughts. Hmmmm… the more I write this paragraph, the more I disagree with my opening sentences. I just think patients need to be left with something more than a handshake and the entire internet to scroll through.
Finally, I realised through all this that pain is pain. MS, ME, lupus, rheumatoid arthritis, fibromyalgia, ulcerative colitis, TMJ… you name it, we’re all going through a pretty similar experience. Sure, there are fundamental differences between these conditions and the treatments available, but at the very heart of all of them is a patient who feels like they’ve lost control of who they are. They rediscover themselves as someone fighting or suffering or – more likely – a bit of both, and they work to cope with everyday simplicities that have become ever more complicated.
What this all means for you, dear reader, is that if you find a blogger who writes well and doesn’t blind you with ghastly font and crazy colours, stick with them. They’re a good find. And if you can’t find a blogger who speaks your language, check out other chronic pain writers who may be dealing with a different kind of pain, because it turns out pain is pain.