“What I’m really thinking” series, Guardian Weekend magazine, 12 March 2011

From ‘The Guardian’ Weekend Magazine: “What I’m really thinking” series, 12 March 2011

What I’m really thinking: The woman with ME
‘Yes, it’s scary to think you could wake up with a cold one day and never be well again’

Twenty years coping with the symptoms of ME is bad enough, but 20 years of coping with people’s reactions to it adds insult to injury in the most literal sense.

First was the era of “yuppie flu”, when people you’d never met before felt entitled to interrogate you as to the validity of your illness and your presumed psychological deficiencies. Nowadays I get either the “you need to pull yourself together” brigade, or the alternative types who ask what my illness means, and are sure I could be well if only I understood what it was trying to tell me. Well, if I haven’t figured that out in 20 years, that must mean they think I’m pretty thick. Then there are the ones who say, “But you always look so well.” Of course I look well when I’m out and about; it’s because that’s a day when I’m well enough to drive. They should see me on the other days.

Of course, this is largely about the rudely healthy being in denial of the reality of illness. Yes, it’s scary to think you could wake up with a cold one day and never be well again, and there’s little you can do about it. But don’t try to force me to collude with you in trying to deny that it happens.

What I mind most, though, are the people who listen to my story with such sympathy, but then take equal time to describe the horrors of their current cold/flu/chilblains. My usual response? “Don’t worry too much about feeling ill, it gets easier after the first couple of years.” That shuts them up.

• Tell us what you’re really thinking at mind@guardian.co.uk

ME CONNECT HELPLINE

0344 576 5326

Available every day of the week between these times: 10am - 12noon, 2pm - 4pm and 7pm - 9pm.

Calls cost the same as other standard landline numbers (starting 01 or 02). If you have a call package for your landline or mobile phone then calls will normally come out of your inclusive minutes.