Thursday, April 18, 2013

Move it... and sometimes lose it anyway.

I think every chronic illness patient has a phrase which they particularly dislike hearing. For some people “You’re too young!” or “But you don’t look sick?” really hit a nerve. Personally I don’t mind those so much. I think they come from a place of misinformation and while it can be irritating to hear them over and over again, it’s the not the person’s fault if they don’t know what they don’t know.

The one that really irritates me is: “Move it or lose it.” I dislike this, because I don’t think people have any idea what it really means, they just like parroting catchphrases and particularly like catchphrases that rhyme. I also dislike the fact that this is offered up as a piece of advice. For one thing, when it comes to autoimmune forms of arthritis yes, absolutely exercise is important, but you may still “lose it” anyway. Last week one of the joints in my finger stopped moving completely and has been locked in place since. It is somewhat swollen, so I’m hoping that maybe if the swelling goes down it will “unlock” but it could very well be stuck permanently from now on. I take pretty good care of my hands. They’re the only joints I consistently do any physio exercises for, and everyday life provides plenty of movement for them, but they are also the area of my body where I have lost the most range of movement and function.

When it comes to degenerative forms of arthritis (for which move it or lose it is most relevant) it’s still just a catchphrase not advice. It doesn’t explain what type of movement is helpful, and doesn’t do anything to address any barriers. When I hear this, the first thing I picture is someone swinging their joint wildly back and forth repetitively – that’s not a way to prevent arthritis; that’s how you give yourself RSI. It really should be “move it or lose it, but don’t forget to plan and pace!” But I guess that isn’t as catchy.

Perhaps you may think I’m being unfair – the phrase is just supposed to be the reminder and motivator not the sum total of the treatment plan. Unfortunately, I know from my mother’s experience that this isn’t always the case. When she began to have severe pain in her fingers and one of her joints kept locking, my mum went to the doctor who told her “It’s osteoarthritis. Move it or lose it.” and no, I’m not paraphrasing, that was word for word all he had to say on the subject. He didn’t even look at her hands. While my mum was at the time at an age where onset of osteoarthritis was more likely than an autoimmune form, I found it astounding that given she also had psoriasis, psoriatic arthritis in a close family member, and the joints affected were DIP joints (the end finger joints; most often affected in PsA.) that he wouldn’t at least investigate. I insisted Mum go back, and at the very least get some clear guidance on what exactly she should be doing. She was again dismissed with “move it or lose it” as her only advice.

Swollen DIP joint
(Distal interphalangeal joint)

Some months later, (after she had decided to retire as she was unable to complete parts of her job without full use of her hands) Mum saw another doctor, who actually looked at her hands, and it turned out she did not have osteoarthritis but a treatable condition. The treatment plan included complete rest of the joint for two weeks, so the “move it or lose it” had in fact been exacerbating the condition.

“Move it or lose it” is not advice, nor is it in itself a treatment plan. It would be like telling someone who has depression to “turn that frown upside down” in place of offering a referral to counseling. If you’re a medical professional, please realise that when it come to exercise it’s not the fact that we need to do it that’s confusing people. It’s the how and what to do that’s the problem. So if you’re still really keen on using rhyming catchphrases, then by all means say “move it or lose it” but follow it up with a referral to physio or at the very least a proper explanation and plan.

Thanks for reading,

Little Miss Autoimmune

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