One of the most annoying things about having a chronic disease (I have a few) is that people JUST WILL KEEP TELLING you it is all about having a “good attitude”. “Think positive,” they chirp at you, as they take off for exotic travel or even a job that you can no longer manage to do. Or toddle off for a day wandering through the shops, also impossible.
It’s seriously annoying and the official support people are bad about it too. I’m coming up to my 14th year officially with Multiple Sclerosis and what do I get in my email box from the MS Society but yet another perky article about someone who is ‘living well’ with MS.
Well, good for him.
I think in general I have a good attitude about the disease that is eating my brain. I work out, I take steps to maintain my abilities, I push myself to remain involved despite the horrendous fatigue and pain blah blah blah I deal with every day. I try not to complain. Because of this, people think I’m more able than I am, and when I bow out of things, they look askance at me, not knowing how much of my life I spend recovering (or rather, not recovering), lying on my couch like a beached carp. It’s not always fun.
And then they offer the helpful advice – which gets offered in piles despite my increasingly tired expression. “You should eat this/seek counselling for your inner trauma/exercise more/learn a language/try dancing/singing/avoid sugar/do pot/take supplements/meditate.”
As anyone who knows anyone with MS should know (and there are a lot of you out there!) the disease is unpredictable, even by the experts. They still don’t know a cause (except maybe Epstein-Barr virus) and there is no cure. Treatments may or may not have a positive effect. Trust us, we’ve tried them. All of us with it try our best to live our lives within the parameters we’ve been given, and the people I know with MS have a sense of humour about it overall – we laugh with each other and find positives even without the help of our well friends.
But when the blues hit, and they do, both from the actual brain damage caused by the disease, and the heartlessness of its incurable, progressive nature, being told we need to change our attitude is completely enraging.
This is true for all sorts of chronic diseases – arthritis, diabetes, cancer. It’s as if the thought of having to see people actually inhabit their disease (which one must do to deal with it effectively) is impossible for people to stand. We suffer. It’s the reality. Pretending we don’t is like telling a suicidal person they should just get over it.
Instead, I wish people would be understanding, just be there, without the need to comment or judge or make a big deal of it. I realize this is a difficult request.
In the spring, I went to visit my son and his partner, and we went for a hike along a snowy ridge. By the time we were done, I couldn’t lift my legs adequately to take off the gripper things I’d attached to my boots. My son looked at me and without a word, bent to help me take them off. I felt like Vera Stanhope, when her Sergeant bends to put on her booties at a crime scene. No comment, no judgement, just there.
It was the perfect intervention. Not done with pity, not offered when not needed, not pushy or demanding of thanks. Perhaps those lucky enough not to have a chronic disease (YET) could take this example forward.
I know having this catastrophe happen to me has taught me a lot about how to approach the inevitable need to proffer advice. I’m still learning, have a long way to go. I was a nurse before my forced retirement and nurses offer help, even if it isn’t asked for…
But improving my attitude isn’t going to make one whit of difference to anything. So stop %$*^%#% telling me it is.