Tuesday, 15 July 2014

How Are You?

So, how are you today?  We ask this by way of greeting, not really expecting the truth from the one we greet. Most of the time, we know this is just a social convention and answer 'Fine!' even when we aren't.  I was musing about this and added a 'check in with your body' note to a workshop plan, while the thought was fresh in my mind, when a Facebook post appeared which gave me food for thought.

It was a drawing of a knight in armour standing on a bald head, fighting off a flaming dragon. The message read 'Never own a disease. Reduce the amount of time you talk about being ill. Refuse to allow illness a place in your consciousness'.

Several friends had already seen it and commented their wholehearted agreement. Uh oh. I didn't agree.  I often find I'm irritated by the memes which my friends happily share, and frequently have to point out that something is a hoax or just a collection of ideas which people would like to be true and sound as though they should be, but for which there is no evidence. Do I ignore it, or comment, even though my dissenting voice could make me appear pedantic and negative? (Vote now!)

If you voted 'Comment' then either you know me, or you also find yourself disagreeing with social media memes, or both.  My comment was:

'I'm in two minds about this. I thoroughly agree that it doesn't do to think or talk about or focus on a disease, pain or a condition more than you need to, because you can start to wallow and feel sorry for yourself, which only makes things worse, not to mention boring the pants off friends or inciting others to wallow as well.
But for chronic conditions which are primarily self-managed, you have to 'own' your condition in order to 'own' your self care and management. Saying that you refuse to allow it a place in your consciousness is like saying you can ignore it or deny its existence. Furthermore, each person's experience of the same chronic condition can be individual and unique in the details, so in a way, it IS (e.g.) MY [experience of] severe osteoarthritis and I have to acknowledge it just enough to learn how to manage it and my life with it.  I give it roughly the same status as washing up - it is always there, needs to be done, I don't enjoy it, you can do things to minimise it and it's good once it's dealt with, however temporarily.
I've encountered some people who 'refuse' to be ill, coming into work with flu, dosed to the eyeballs with some remedy and mainlining coffee (as if that's any substitute for the sleep and water their body is demanding), doing a bad job which someone else has to deal with, correct and complete, spreading their germs around, and going home frankly unsafe to drive. We need to listen to our bodies and act on our physical needs. Denial can be dangerous.'

Having popped my head above the parapet, I clicked on the picture to see what comments had been added at source. It was very good to see that I wasn't the only one who thought the advice on the picture overly simplistic. Predictably, there were one or two who believe it is simply a matter of eating right, keeping fit, avoiding toxins, refusing to be ill, refusing to accept a diagnosis, refusing to die (okay, good luck with that!). Whilst the power of the mind shouldn't be underestimated, there were some who considered that illness was a result of negative thinking or that anyone who was ill only had themselves to blame.  They were gently shot down by some with first hand experience of (e.g.) a child fighting leukaemia, who was too young to have brought it on themselves and who stayed positive until the end. And someone who said that it must have been the toxic chemo drugs which killed them, not the disease, could not then answer why others who refuse chemo and believe deeply that they will be fine with alternative therapies and dietary changes don't manage to survive cancer.

Some time later, I went back to the post to see if there were any further comments. I expected some flak, but there was nothing.

Yes, it's often a case of mind over matter, but even if you do mind and it matters very much indeed, and you are feeling desperate for the pain and misery to stop, there are a couple of things to remember: Don't let your illness define who you are. Don't let it run your life. Try to stay positive and carry on as normal.

Sadly, there are times when this just doesn't work. My lovely friend S who has IIH was the one who originally told me not to 'own' my osteoarthritis pain. Unfortunately, she doesn't seem to be getting any better and may be admitted to hospital again this evening.  I positively wish I had a magic wand.  Then when I ask someone 'How are you?', with a wave of my wand, the reply 'Fine!' will be true (whether they want it to be, or not!).

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