What really bothers me? I've lived with ongoing chronic pain for the last 11 years. I want to know why it is that everyone (the guy who owns the dairy, the mechanic, your second cousin) suddenly has a medical degree and knows the one thing that will cure you of all your pain?
Why do they assume my life is no longer exciting or worthwhile? Sure, rescuing cats and volunteering when I am able may not seem worthy, but it beats sitting around the house colouring-in (no offence to the colouring-in addicts).
Chronic pain is an invisible ailment. If I nearly cut my finger off while cooking and end up with a bandage the size of Everest, the sympathy I get is enormous. However, with chronic pain it's: "You'll get over it", "Take this herbal pill", "Meditate", "Be mindful". (I am all the time mindful of how much I hurt.) And asking me every time you see me how the pain is isn't constructive either. There was no miracle cure since I saw you yesterday. Why can't people just accept this is my life, and I'm doing the best I can? Jo
I am nervous of how to reply, Jo. A dear friend recently charged me with not taking her chronic fatigue seriously. And, on analysis, I realised she was right. I do not know if there is any relation between your condition and hers, but I suspect they provoke similar reactions in others. As relatively new diagnoses, we do not understand them, thus are mistrusting of their validity. And, like depression, perhaps we imagine there is an element of self-command at play. That a slap on the back, a "Cheer up!" might, in some way, be a cure.
I should be more sensitive. My hormones routinely wreak havoc on my sense of equilibrium, and sometimes I have shared my misery, only to have it dismissed by the well-meaning. Yet unless it is happening to ourselves most of us only have a limited tolerance for another's discomfort. We want to fix it, and when we can't we are left fumbling for what to do, left to tread clumsily on the eggshells the sufferer, whether unwittingly or deliberately, has scattered self-protectively about themselves.
It seems to me your issue with how people behave towards you and your condition is two-fold. On the one hand you are frustrated by their struggle to comprehend it, by their assumption that they do comprehend it, and on the other, while your pain itself is enough of a reminder of its constant presence without people's questions, you are hurt by their lack of compassion.
Pain is debilitating, pleasure-blunting. And it can make us prickly. I am sure the people around you will be trying to get it right, to say the right thing. Try to forgive them their bungling.
Evidently last week's column, which wove together the words and woes of several women readers regarding the significant role of their hairdresser, galled Michael, for he sent me a rather sarcastic email. "For so long," he wrote, "the Herald has concerned itself with things that have nothing to do with real women in the real world.
I think you know what I mean, all that stuff about politics, global warming, war and so
on. Keep up the good work, Megan. I hope your writing will encourage the girls you work with to follow your lead."
That night I was lucky enough to hear the extraordinary Gloria Steinem, that glamorous revolutionary (with great hair!), talk about women's lives and choices, about power and submission. I thought about Michael's peevish email and I failed to see how exploring the complexities of our different relationships could preclude an interest in the bigger picture. And then the next day I received a delightful email from Patrick, who said the discussion of hairdressers had resonated with him. "The massaging of the scalp after the hair wash is one of the most enjoyable experiences I know.
In fact, if I ever became a millionaire, I should want to have this experience daily." Thank you, Patrick. Your humble humanity moved me.
As ever, I await your emails.
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