Friday, September 21, 2012

On what other people might say when you've got ME, or cancer, or whatever

Action for ME has invited members to contribute to an article on "What not to say to people with ME" for its magazine InterAction, in response to a blog post by Toni Berhard. I've sent this...

What not to say to people with ME? Are we going to publish a rule book? Seriously? Who cares what people say? If they're well-intentioned but don't honestly know what to say, they may blurt out something that comes across all wrong, and if you're having a bad day you may take it the wrong way, but can you honestly say that you'd always say the right thing in similar circumstances? I bet you can't.

Toni Bernhard says she doesn't want to hear, "Give me a call if there's anything I can do" because it's unlikely she'll call "because I’m too shy, too embarrassed, too proud, too sick—or a combination of the four." Well, that's her problem, surely? And if someone says something that's really unhelpful or plain daft, that's their problem.

Maybe it's my age (68) and the fact that I've got multiple health problems, not just ME, including having had cancer twice, but I'm just glad to still be here; I couldn't care less what other people think or say. I did, once. I overheard an arrogant surgeon telling medical students on his ward round that "ME is what I get on Friday evenings after a busy week," just after he'd examined me. I was so cross I told a junior doctor I wanted to discharge myself and find another surgeon. She said the surgeon didn't have much of a bedside manner, but he was the best there was with a knife - so I stayed, and he did a good job.

Toni Bernhard's blog post reminded me of a column that Deborah Orr wrote for the Guardian in April, when she'd had cancer, called "Ten things not to say to someone when they're ill". They included, "You're looking well." Some people just can't take a compliment, can they? I have more sympathy with Barbara Ehrenreich, the American writer who's also had cancer. She hates the cloyingly upbeat "pink ribbon culture", and so do I. She also wrote in her book, 'Smile or Die: How Positive Thinking Fooled America and the World', about all the clichés beloved by obituary writers about "fighting" cancer, or "losing the battle". Compared with that sort of rubbish, having someone tell me that I still have my sense of humour, despite having ME, is fine by me. One thing I do get cross about is quacks; when you've got ME, you get a lot of people recommending quacks of one sort or another. They even have ads for them in our magazines!

It's all about expectations, isn't it? You're having a bad day and you want comfort and support, but then you come across someone who's not really thinking, maybe they're preoccupied with what's going on in their life, and they say something that upsets you. It's not easy, if it's that sort of day, but maybe that's their problem? Your problem is allowing yourself to get upset.

A couple of years ago I did a pain management course with Arthritis Care; another of my problems is severe arthritis, mainly in my spine. I soon realised that I already knew how to manage my pain. I've been doing it for years. It's called distraction. I'm interested in lots of things that are far more interesting that ME, and if I'm interested in something, anything, other than ME, or pain, I forget about it - most of the time. We all have bad days.

I have a feeling that my contribution won't find favour with a lot of InterAction readers. I've noted a tendency to victimhood among many with ME, which makes me disinclined to associate with them. It tends to drag you down.


theotheralig said...

I hear you. I have fibromyalgia. Yes, it hurts. I've had cancer, that hurt too. I went back to work a month after my last chemo because I had to financially.
I won't be a victim or feel sorry for myself generally. I, too, deploy distraction on bad days.

Margaret Nelson said...

A woman's got to do what a woman's got to do.