National Arthritis Week

It’s National Arthritis Week.

Who do you imagine when you think about someone with arthritis?  I think the stereotype of aged grandmother, white hair and deformed fingers still persists when it comes to this disease. Yet, when I think of all the people I know with one kind of arthritis or another, none of them fit this stereotype.

There’s my great gig- going friend. He’s 50 now, but he has had Psoriatic Arthritis for as long as I’ve known him – which is around 9 years now. He loves music festivals and spends his summers going from festival to festival, stewarding, or litter picking, sleeping in his van. We’ve been going to gigs together now for nearly a decade and when it comes to a ven diagram of our music taste, there is probably a bigger crossover with him than with anyone else I know.  He takes methotrexate, which seems to suit him as he says he has few side effects and it seems to keep his arthritis under control. We rarely talk about the fact that both have some kind of arthritis.

There’s my wonderful campaigner friend down south. She’s about the same age as me and has had her rheumatoid arthritis since she was in her teens I think. She’s active in a range of campaigns, from Reclaim the Night to anti-arms and anti war campaigns, while also working part-time for a charity. I met her through social media and was attracted to her spirited and funny tweets, before meeting her in person and discovering we had many mutual friends.

There’s my best friend, recently diagnosed with osteoarthritis in one (or maybe more?) of her joints. She’s a mum to young twins and works part-time. We met through singing and have spent many an hour chewing the fat, and talking about our lives.  She’s warm and caring and will always listen to me when I need to complain about my lot.

There are other people in my extended social circle – people I don’t know that well personally, but who are friends of friends. The mother at Zumba, who no longer comes, who was diagnosed with an unknown type of inflammatory arthritis, possibly reactive arthritis. She was always at the front of the class, dancing as if no one was watching her. The last time I saw her she told me she was still getting occasional flares but trying her best to keep up with her yoga practice which she felt was really helping her.

There’s editor and writer, who I recently discovered also has palindromic rheumatism. She keeps hers under control with diet, yoga and meditation.

There’s the 40 year old friend of a friend, whose recent flares sound remarkably similar to the onset of my PR and who has yet to have a firm diagnosis. She’s finding it all quite weird and frightening and can’t quite get her head round the fact that she can be in absolute agony for 36 hours as if she’s severely injured herself, and then it can disappear completely as if it had never been there. 9 years after the onset of my PR, I tell her that I can barely get my head round that too!

Then there’s all the different people on the social media sites that also have some kind of arthritis. They range in age, personality type, country of origin and attitude towards their illness. Some are determined to ‘fight’ this disease and carry on as if it did not exist at all. Some are determined to find a dietary route to keep it under control. Some prefer to control it using prescription drugs of one kind or another. Others are determined not to let any chemicals enter their body.

And then there’s me. 43 year old writer of blogs (and other things). I’ve now had PR so long that it has become a part of my identity – for better or for worse. I’ve given up fighting it and accept that it will do what it will do. Mostly, it doesn’t do too much damage. I don’t get as angry at it any more, though it can still frustrate me. I don’t think I control it in any way, but I live with it as best I can, eating as healthily as I can, meditating daily (still!) and trying to balance my life and my energies.

Arthritis deserves a new image. One that acknowledges the fact that it is actually a broad umbrella term for a range of different joint conditions and one that acknowledges that the people who are afflicted with it may only have two things in common: the fact that they are human beings, and the fact that they have a diagnosis of arthritis. You can’t always tell by looking, that’s for sure.

In my opinion there still needs to be more education, MUCH more research and, given the most recent comments on my blog about unsympathetic medical professionals, much more compassion towards people with arthritis. We live amongst you!

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2 responses to “National Arthritis Week

  1. I found your blog by googling palindromic tendinitis and discovered I have symptoms pretty much like you without the fatigue. I’m lucky my rheumatologist takes me seriously, but that’s only because I have a high positive anti-CCP. With the RA sword dangling over my head, I nevertheless refuse to present him any definitive joints 😉 and I’d like to keep it that way. I’d rather hang out here with the mysterious arthritis gang, if that’s okay.

  2. I am really pleased to see someone challenging the stereotype. I have commented on many newspaper articles about the pictures they use to illustrate an ‘arthritis’ article. I was 24 in 1981 when I was diagnosed with RA and people are still surprised when I tell them that. Keep up the good work!

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