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Five Things People With CFS/ME Would Be Happy Never to Hear Again (And What We'd Like You to Say)

25/03/2015 17:40 GMT | Updated 25/05/2015 10:59 BST

1. "Chronic Fatigue Syndrome. Fatigue - that's like 'tired', right?"

Well. Um, sort of. But if you're thinking about the sort of tiredness you get when you've had a busy day, you're not in the right ball park. That's like running down the road to visit a neighbour and saying "well, that's like doing the London Marathon, right?"

On a bad day, it's like when you wake up with full-blown flu: your entire body aches and there's no way that you feel capable of doing anything at all. On a better day, it's more like the day where you are just feeling a bit better after having flu, but by the time you get up and get dressed, you realise that this has made you so tired you need to go back to bed again. You get tired when you've done something; we just feel like this from the get-go (though it gets worse if we have the temerity to try and live our lives).

2. "ME - oh yeah, that's just when you're tired all the time."

Obviously, as in the last point, ME does mean that you're exhausted pretty much 24/7. But if you go to the doctor and tell them you're just tired, you're not going to end up with a diagnosis of ME. The ME Association says that as well as 'unexplained, persistent chronic fatigue' there must be:

"The concurrent occurrence of four or more of the following symptoms: substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern, or severity; unrefreshing sleep; and post-exertional malaise lasting more than 24 hours. These symptoms must have persisted or recurred during 6 or more consecutive months of illness and must not have predated the fatigue."

Exhaustion, yes. But if only that were all! Oh, the fun and games of being constantly in pain, needing masses of sleep yet still waking up unrefreshed, and forgetting the words for every day objects. We're a bundle of laughs, we are.

3. "My friend has ME/CFS and she can do X."

Trust me, we're delighted that your friend does not have as severe symptoms of ME as we do. And there is undoubtedly a big difference between how badly affected people can be. But it doesn't mean that we're malingering when we say "Sorry, I just can't manage it." Nor does it mean that your friend is making up the fact that she has ME. Take measles - just because some children can end up with a permanent disability or even dead doesn't mean that the kids who have spots and feel a bit under the weather don't really have measles. Illnesses vary in severity. It's reasonable to presume that someone knows their own body better than you do - please, please take their word for how they feel!

4. "But I saw you do Y last week."

This is the thing that a lot of people don't 'get'. ME, like a number of other illnesses (MS, lupus, fibromyalgia) fluctuates. You don't have the same amount of energy every day. Equally, maybe last week I decided that doing the supermarket shop would be my Big Thing for the week, and chose to use my energy on that. But this week, my son's got a music exam, or I've got a doctor's appointment (oh, the exhaustion of never-ending doctor's appointments.... Sorry, got distracted for a moment there) so I have to deal with that instead. The Spoon Theory says all of this better than I can do, but the quick version is: you have a certain amount of energy and you can choose where to use it, but when it's gone, it's gone.

5. "But you don't look sick."

A friend of mine smiles at people and says "thank you, I am very happy I don't look as crappy as I feel - that would just be too depressing." Which would definitely work as a response to people who mean well with the comment. This is sadly not always the case, and to those who are intending it as an accusation that I'm lying (subtext: "You're not ill, anyone can see that") I have, as yet, not replied by saying "And you don't look ignorant, so it's clear that appearances are deceptive" but it's really tempting sometimes. Please remember that invisible disabilities exist - not just ME/CFS but cancer, heart disease and all sorts of other nasties. You can't expect to tell whether someone is disabled just by looking at them. I am just as disabled when I'm sitting on a wall watching my son play as I am when I'm in a wheelchair.

I realise that people say these things because they're not sure what they should say. So what should you say? Obviously it depends whether you're a close friend or a stranger. As a stranger, a simple "I'm sorry to hear that" is sufficient. If you're a bit closer, perhaps ask about the illness. "I don't know much about ME. Can you tell me a bit about it, so that I will know how to be a better colleague/friend/[add as necessary]?" Only ask if you want to hear the answer, though! And accept the answer you get - remember, we do know more about our illness than you do! In general, just be kind and polite. It's not that hard! And we will appreciate it so very much, most particularly because you haven't said one of the above five things!