It’s ME Awareness day. I’ve had ME/CFS for over twenty years to a mild-moderate degree, since I had Glandular Fever in 1993. I’ve had better years when I’ve almost felt normal, but it’s always been lurking. I’m only as well as I am because I’ve been lucky enough to be able (just) to pay for tests and treatments unavailable on the NHS (I have regular B12 and Magnesium injections from a private GMC-registered doctor of environmental medicine.) Others are not that lucky and the NHS still does not provide adequate treatment for this illness.
This blog is about attitudes and what to say – I’ve put up with some rancid comments over the years, not least when I wrote for Guardian Comment is free under the pseudonym Jayne Austin about ME and welfare benefits. Last night, I made a very quick and messy little comic to celebrate ME Awareness day, and to suggest how easy it can be to say the right thing (with a nod to Schulz, Peppermint Patty and possibly a few others – what can I say – it just came out!)
And if you fancy it – here’s where I get a few things off my chest: I’ve felt at times that rather than bother to educate themselves about the illness and how they could help, some people have been all too quick to judge. I feel that some of the stigma instilled by right-wing media in the 1980s is still imprinted in the ether: ‘Malingerers’ Disease'; ‘Yuppy Flue'; ‘Workshy’ albeit no longer in those words. These papers are still printing back-peddling articles with titles such as ‘ME is real after all!’ We know! The World Health Organisation (WHO) have recognised it as a physical and neurological illness since 1969.
Here are some things that people have said over the years with regards to the illness, with the answers I wish I’d had ready but didn’t, due to feeling dismissed, angry or hurt. I should probably grow a backbone and respond at the time, really, but distance brings reason and it’s hard to think straight when you’ve just been stung. This is not to say that others haven’t been supportive, too, of course, but raising awareness means confronting some of the ignorance. I realise that some of these words come from misunderstanding rather than malice – all the more reason to raise awareness.
[My voice = bold]
I’ve been diagnosed with ME.*Tut* You haven’t got that – I have a friend who has ME and she can’t get out of bed! It’s really serious! ME is a fluctuating illness, and comes in degrees. Sometimes all I can do is lie down, too, but you don’t see me at those times.
But you don’t look ill! You can’t see this illness. Some people with cancer don’t look ill, or even feel ill, but you don’t query their illness with regard to their looks. I feel you are trying to catch me out for a crime I haven’t committed.
I remember back then – you were so boring and didn’t come out or drink much! Poor you, it was a bundle of laughs for me too.
Oh but you’re always ill, Paula. Sorry to be such a bore – what a terrible chore for you. ‘Chronic’ means ‘recurring’ or ‘persisting’.
Everyone gets tired though! Right. But they are not tired all the time; they are tired after doing a normal day’s work, at bedtime – not just from walking up the stairs. And tiredness is only one of the symptoms, but I guess you’re not interested in hearing about them – you are interested in dismissing me rather than hearing me.
I know Paula is just a hypochondriac (in sympathy, to my husband). Thinking you are ill when you are not ill, and obsessing over illness, isn’t the same thing as seeking answers and possible treatments that might help a multi-faceted illness for which there is no cure.
Maybe you’re just not ready to get well yet? I know your sentiment comes from a good place, but I can’t simply decide to get well any more than someone with MS, or any other illness, for that matter. I’m not a magician. Also, I’d happily trade an organ for full health again – that’s how ready I am – although I’m not even allowed to donate blood let alone an organ.
Maybe if you try to do a bit more exercise your tolerance would increase? We call it Post-Exertional Malaise in the trade. Overdoing exercise can exacerbate symptoms in people with ME – see here. In fact, in extreme circumstances, people have died from being forced into treatments that include Graded Exercise Therapy (GET).
Go on – have a drink – it’ll do you good! You know you want to. Yes I do want to – there’s nothing I’d love more than to tie one on with you right now, really! But No, it will set me back. I can’t sleep after drinking alcohol, and it can be harder for people with ME to process toxins. It might take me days to recover from even a relatively small amount. But I can be witty, friendly and good company without alcohol. Is that OK? And I’m a cheap pub companion, when I make it out.
I can’t get a dog yet because I can’t guarantee being able to walk it twice a day. I bet you could if you tried! No. Pushing myself unduly can exacerbate my illness. I know this from having done so. Please give me some credit for knowing my own health better than you do. It’s OK to push myself occasionally but not long-term.
Why don’t you play the violin any more? What a waste! Same reason as last time you asked – because I can’t hold it up for long enough due to muscle pain.
GP, 1994: You have Post-Viral Fatigue Syndrome
GP, 1995: You’re just unlucky!
GP, 1995: There is nothing we can offer you other than another sick note!
GP, 2007: Yes, maybe you should have some tests – it does seem to be persisting!
And on websites that shall remain nameless, I’ve been referred to as a ‘hypochondriac’ and someone with a ‘mysterious illness’.
Please help to spread awareness about ME and share this blog and cartoon – thanks!