Thank heaven for little labels

June 6, 2008 at 7:51 pm | Posted in rheumatoid arthritis (RA) | 4 Comments
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I was doing some transcription the other day and a ‘health professional’ made a comment that some patients ‘do like to cling to their little labels’. She was referring to people who say ‘Oh, I’ve got x, so I can’t do y’ without either making the effort or looking for ways around the problem, but it got me to thinking what a relief my ‘little label’ was! Having had months of unexplained pain, a maybe or maybe not blood test result, and no firm conclusions (which is typical of RA because it’s very hard to diagnose with any certainty) I was developing a fear of some doctor turning round and saying, ‘Frankly my dear, it’s all in your head’; not because I thought it was, but because I knew damn well it wasn’t! I was also worried that friends and family would be thinking much the same thing. Now I’ve got my ‘little label’ if I feel so inclined I can turn round to a friend or a colleague or, as today, the vet, and say ‘Sorry I can’t do x, ‘cause I’ve got RA’ and be reasonably certain of a sympathetic reaction … in the latter case a nurse to carry a very heavy cat back to my car for me! ‘Sorry I can’t do x, ‘cause I get this funny unexplained pain in my arm’ is likely to get nothing more than a stony look that says ‘what a bloody hypochondriac’.

Not everyone feels the same. At a local Rheumatoid Arthritis Society meeting recently and was chatting to a very nice lady there who mentioned that she was on a particular treatment for painful muscles, as well as her RA problems. ‘Oh,’ says I, recognising the name of the treatment because a friend of mine has the same stuff for the same condition, ‘is it fibromyalgia?’ ‘Well yes,’ she said, ‘but I don’t like to use that word because then it labels you, doesn’t it?’ I can see her point. Fibromyalgia is the baby of these aches and pains illnesses – a relatively new term, only ‘invented’ in 1976, plenty of doctors still believe ‘it’s all in your head, dear.’ Just because the term wasn’t coined until 1976 doesn’t mean that the illness didn’t exist before then of course. In fact it was probably part of what was known as ‘rheumatism’ as distinct from ‘rheumatoid arthritis’. Or maybe it is a new condition (although the evidence doesn’t seem to point that way). One of the fascinating facts I learnt at the meeting was that apparently rheumatoid arthritis didn’t exist prior to about two hundred years ago.

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  1. I understand your feelings about the labels. The first time I had xrays taken I cried. Because I finally had some validation. I finally had proof, and everyone had to believe me.
    It’s hard enough to deal with the pain. It makes it worse when you feel like people dont believe you.

  2. So glad someone else understands what I mean. ;o)

    It didn’t help that I’d had sundry other nebulous problems over the years that never did get fully diagnosed – now I look back on them I wonder how many were related to RA! That’ll be the subject of another post when I have the energy to write it!

  3. I was diagnosed about a week ago and that ‘little label’ has been a bit of a blessing and a bit of an annoyance! The blessing is that my husband and I have something ‘concrete’ we can learn about and make real adjustments for. And we do need to make adjustments! We have a large house with large yards. That might not last long!

    The annoyance is that, since my diagnosis, my well meaning friends and co-workers jump in and don’t let me lift, carry or do much of anything physically, even when I insist that I at least try!

    I wish you well and hope we can help one another on this adventure!

  4. Well I understand your frustration but you know, maybe they’re right… at least some of the time! I guess it’s a matter of finding a compromise between ‘don’t wrap me in cotton wool’ and ‘I’m going to beat this’ versus ‘This is something I’ve got to learn to live with’. I love learning, but I have to say learning to live with this is NOT fun!


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