This Arthritis Week (7-13 October 2013), Arthritis Research UK is encouraging people to make a ‘Joint Effort’ to raise awareness about arthritis. I’ve been doing that in my own way by talking to people about what it’s like to live with rheumatoid arthritis. Yesterday, on the tube, I got talking to a woman in the seat next to me (about 30 years older) who had osteoarthritis. During our chat, she showed me her hands and wrists, pointing out where she’d had an operation on her wrist and which fingers were particularly affected. I showed her the little finger that I fractured through typing which was clicked back into place while in Paris on Easter Sunday 2012; the effusion on my left wrist; and the accumulation of synovial fluid above my wrist joints, making them appear even more swollen. We agreed that one of the hardest things about having arthritis (whether RA or OA) is that it can be an invisible illness and people don’t always realise.
Then today, at the hair salon, I mentioned it (having arthritis) to the hairdresser. She asked lots of questions – how did I get it? how was it treated? would it just go away with diet? Her last question is a myth that I’m constantly having to bust. So many people think that it will just improve by changing diet, or with exercise, or that all I need to do is pack my bags and go to live in Australia! If it was that simple then no-one in Australia would have it! I’m not angry, just frustrated at people’s lack of knowledge around such a common disease. Although I dislike the word ‘disease’,’illness’ makes it sound less serious, like flu, and doesn’t seem to capture the severity of it. Having said that, I also use the word ‘condition’ so maybe it depends who I’m talking to and how positive I feel about the situation. Ideally, just saying ‘rheumatoid arthritis’ would prompt a ‘yes, I know, that must be tough’ reaction rather than questions about sun and diet. Hopefully things will change, and awareness weeks are a big part of that. One brilliant way to get RA into the public consciousness would be through a soap character, showing their journey (TV word but the best one in this context) from diagnosis to treatment, with readjustment to daily life and managing friendships and relationships all part of the mix. Showing the character experiencing drug-indued remission on screen would also be amazing. Until that happens I’m going to keep talking about RA whenever there’s a chance (in a ‘did you know?’ way rather than a ‘you should know this’ way) but not let it dominate my life. It’s a tricky balance to strike, and at the moment the RA side is beating the enjoyment of life side. With luck, once I start Humira, the balance will be firmly back in favour of ‘having fun’.