getting something off my chest...

warning - long and possibly offensive post

I'm not sure how many people have said to me "Oh my Gran has got that", when I've told them I have rheumatoid arthritis. It must be about the same number of people who have said "Have you tried cider vinegar and honey?", or "It must be bad at the moment because it's cold/damp", or "You ought to take glucosamine, a friend of mine takes it and she doesn't get arthritis any more", or "Why don't you wear a copper bracelet?"
In the vast majority of cases of course, people are genuinely trying to be kind and helpful, although there is sometimes an element of "what are you moaning about - it's not that bad." The assumptions that lie behind all these comments is that people know what rheumatoid arthritis is, and that all arthritis is the same.

"Arthritis" simply means joint inflammation, it does not just mean "aches and pains". There are around 100 different arthritic conditions - some relatively benign and short-lived, others are lifelong and highly disabling. Rheumatoid arthritis is in the latter category. It affects less than one percent of people - so it is not likely that your Gran has got RA - although she almost certainly has osteo-arthritis. As we age we all get osteo-arthritis (OA) to some extent - it is caused by a lifetime's wear and tear on your joints. Taking glucosamine or cider vinegar & honey may help, and changes in the weather may make your joints more uncomfortable. People with OA find all manner of things that help relieve the symptoms - the internet is packed with sites claiming that "this" or "that" treatment is "proven" to work. To be frank I mistrust all simple solutions.

Rheumatoid arthritis (RA) by contrast with OA is a disease of younger people (although it persists into old age). It can come on literally overnight, or as in my case, gradually, over many years. Once established however it is usually highly active - destroying the joints of the hands, wrists, elbows, feet, ankles and knees within a few years. Why it usually leaves out the hips and the spine is just one of many mysterious things about RA. Sometimes the eyes, the heart and the lungs are affected. If left to itself RA glues joints together (fusion) and they lock solid - often the only solution is joint replacement - many people have several joints replaced. RA is an auto-immune disease, where the body's immune system turns on itself - and many recent treatments rely on damping down the immune response (although this in turn can bring the problem of increased risk of infection/cancer)
Until recently people with RA had little hope of treatment doing anything other than making their condition a bit more tolerable - painkillers (RA is a very painful condition), anti-inflammatory drugs to try and stop the joints getting so inflamed, and a few exotic drugs, including gold, which seemed to slow the disease down, although at the cost of very unpleasant side-effects. More effective treatments have become available in the last few years - they slow the the disease down and help prevent serious joint damage.

So I say (genuinely recognising just how well-meaning people are) - just because you know roughly what arthritis is, and "rheumatoid" sounds like "rheumatics" (a word some people use to describe "aches & pains") please don't assume that you know what rheumatoid arthritis is.
RA is a painful, crippling, debilitating, unfashionable, unattractive, depressing, incurable and life-restricting disease. And at times I (in common with other sufferers) feel tired, uncomfortable, angry, irritable, useless, insecure, unemployable, sexless, patronised, bored, lonely, old, a pain in the bum, moany and un-lovable. Sometimes I even wonder whether I'm just putting it all on, or exaggerating - not least because a few people obviously think that I am.

It's no wonder that people who have RA sometimes seem a bit fed-up and moany - especially when people say, as people have recently said to me -

Helpful person - "My Gran's got that - she swears by cider vinegar - have you tried it? You must be feeling worse with all this cold weather. My friend has got it and she takes that stuff gluco-something?"

Me - "Glucosamine? - I've tried that and unfortunately it doesn't help."

Helpful person - "Have you thought about moving somewhere warm?"

Me (thinks)........ well yes, I've thought about it, but then again, who hasn't?


This post has been a long-time coming out, not least because I've been afraid of writing something so apparently negative and critical....sorry if it offends, I don't mean it to.

Please find out more about RA here and here...