‘What I’m really thinking’: the person with ME | The Guardian, 16 April 2016

From The Guardian, 16 April 2016. Anonymous contribution.

I have myalgic encephalomyelitis. If you think it is hard to say, try living with it every day.

Yes, I understand that your aunt had chronic fatigue, and that she took some B-vitamins and is all-better now. No, it isn’t adrenal fatigue because that doesn’t exist. Oh yes, how fantastic that your friend’s friend was really tired after a virus, but she tried acupuncture and cut out wheat and dairy from her diet and next week she is running the London marathon.

I don’t have what they probably had, you see, because only 5% of people recover from myalgic encephalomyelitis. It is sometimes called chronic fatigue syndrome, but that’s a bit of a misnomer. I’m not just tired. The paralysis was the first worry. Then all the muscle pain. Then the memory loss. Then losing the ability to speak without stuttering. I started to forget what words meant. Or who my boyfriend was. Then the fatigue came to kick me when I was down. Then the nausea. Then the constant, unrelenting joint pain, headaches, and flu-like symptoms.

Ah yes, I know. You were so tired last weekend, you just fell asleep on the sofa. But were you so tired that you slept solidly for 22 hours and then spent an hour getting from your bedroom to the bathroom and back again before sleeping for another 22 hours? I thought not.

I’ve improved a lot in eight years. But I’ve been told this is as good as it gets. I will never recover unless medicine has a breakthrough. And I have accepted that, so why can’t you? I appreciate your sympathy. Your advice and suggestions are well meant. But please, back off.

• Tell us what you’re really thinking – email mind@theguardian.com

1 thought on “‘What I’m really thinking’: the person with ME | The Guardian, 16 April 2016”

  1. Thank you anon for your article. I have had M.E since 1980 and I am now aged 70. I have suffered all kinds of sarcasm and hurtful remarks from so called friends because of the idea that we are malingerers. One famous journalist named it Malingerers Ennui (possibly in The Guardian). The press also like to seize on the latest ‘cure’ which will inevitably prove all the pundits right and that it was all in the mind.
    I live my life as best I can and my main carer has Aspergers Syndrome so it’s not easy for him or for me.
    I gave up on all that clutching at straws many years ago. I tried every ‘alternative’ therapy that’s going only to be told time and time again that it was MY fault that I didn’t get better, that I was blocking and this showed that all these ‘therapists’ didn’t have the slightest idea of how serious this illness is. People say, “Oh everyone gets tired” but M.E. tired is like no other tired and a little nap or a good night’s sleep won’t put it right. It’s like being attached to a bungee strap for every movement you make. And then if you’re lucky you will have a good day and inevitably you want to make the most of it but every second you wonder at which point you will have overdone it and then you are back where you started. Being inactive is extremely hard for many people and sometimes I just wish I was born a natural couch potato!
    I use an electric wheelchair to get about and one ‘friend’ once said to my husband, “give her a good kick up the ass. That’ll get her out of that chair.” I can’t think of any other disabling illness which would engender such spite.

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