Saturday, 12 March 2011


I was speaking on the phone to a friend with ME yesterday and we wondered what it would be like to have this illness without having to deal with the constant assault of ignorance. Imagine just having an illness, without the stress of feeling you are on trial constantly. (Imagine what our poor adrenal glands are dealing with, years and years and years of having to defend ourselves.) Most of the time you try and switch off, rise above it, get on with things, but then one morning you wake up to broadsheet headlines telling you that 'ME can be cured by exercise' - clever scientists say so! This unleashes such feelings of injustice and rage, you can't ignore it. You have to fight it. There is too much at stake. Then a few weeks later, as you are just calming down, back on an even keel, you happen to catch the end of a radio programme, a programme you wouldn't usually listen to, you are not usually awake. You are once again assaulted - by a tiny detail that may have gone unnoticed by many listeners, but not by you. You hear an actress whom you have admired in The Thick of It and Getting On, Joanna Scanlan, referring to her collapse from nervous exhaustion which led to a year's illness in the nineties. She describes how she had to give up her job as a senior lecturer and go back and live with her parents. She describes (51:30 mins in) how she had become disconnected from her passion for acting and how listening to Nirvana's 'Smells Like Teen Spirit' really helped her 'get back in touch with this creative path'. But in the middle of the conversation she slips in something deadly: Eventually the doctor diagnosed my illness to be what is sometimes called ME, probably in the old days used to be called a nervous breakdown... So once again the myth that ME is a mental illness is being perpetuated by a long, slow drip. I'm sure this actress has no idea of the blow she has just delivered, after all her doctor told her she had ME. It's great she recovered from her own particular exhaustion and found Kurt so rousing. Still, I wouldn't be surprised if the next headline is 'ME cured by listening to Nirvana'. It never fucking stops. And that is why we are so angry.


Cusp said...

There's more of her story here:

Apparently all I need is a Consultant to say...

‘If you don’t go back to be (an active artist) you will be ill for the rest of your life’.

Right then...out with the brushes, the camera, out with the networking head, the funding applications, the private views, teaching, workshops etc etc.

Easy Peasy.....Look I've regained the ten years I've lost since having the last crash and the twenty years before it that I spent building up a career ...and I'm ALL better :O) (not)

Amy said...

You're right that we can't blame this woman if she was diagnosed (though it's another little shard of evidence of the misdiagnosing that's been going on all these years).

But like you, I feel the twist of the knife at the "... ME, probably in the old days used to be called a nervous breakdown."

Funnily enough, I loved Nirvana, but Smells Like Teen Spirit came out not long after my ME diagnosis, and I couldn't listen to it because of the vibrating, nerve-smashing, ear-piercing quality to all that aural "energy". It caused me horrendous pain.

And I resent this idea that frustrated creativity or creative inhibitions are the cause of illness, and that, conversely "getting in touch" with creativity is the way to "work through" to a cure. I've always been a creative person, even just in my head when too ill to be active. I'm positively bursting with ideas, but I'm bed bound. When I try to "express" these ideas, the small amounts I can sporadically achieve make me insanely happy. It's life-affirming. But the effort also leaves me horribly ill.

But we'll keep hearing this guff because it's a narrative that people (especially the media) seem to love to hear - that illness happens for a reason, and if we "work through" whatever has caused our illness; solve the puzzle, the illness will leave us and everything will be ok.

And meanwhile, those of us whose illnesses don't fit this narrative are sick of hearing it, and sick of the the tacit sense of blame that goes along with our not having recovered.

So yes, this is why we are so angry. (At least Kurt never designed a "return to wellness" recovery programme ;) )

Alison said...

Oh god. I'm sorry you had to hear that. Someone who thinks nervous breakdowns are called ME now.

Amy is totally right about the narrative the media loves to tell, and people seem to love to hear.

I think having this disease without having to "deal with the constant assault of ignorance" would be a completely different experience.

I was really into Nirvana at about the same time I got sick, so if the Nirvana Cures ME headline ever appears I will be ready with my little anecdotal refutation.

nmj said...

I actually dislike the song. But maybe I just wasn't listening hard enough for the cure. There is BBC Radio 4 thread here for further discussion on Jo Scanlan comment, I am ME'd out!

Kate said...

You seem to sum up perfectly what I didn't even know I was thinking. Thank you. Interesting debate about the narrative of illness. It does seem endemic across society that we have to give a reason for random illnesses and events, you often hear that we feel there was a reason why someone survived a random shooting for example, or that psychological grit and determination wins over physical adversity. The groom with the broken legs who manages to walk down the aisle doesn't say he managed it because his bones had finally knitted together just in time, its because he wanted to show his betrothed how much he loved her. This is highlighted and compounded with an illness such as M.E. by people who think that it has a psychological component, and it is so difficult to challenge without sounding like we don't have determination and courage, which then feeds back into the pseudo psychological loop.


nmj said...

That's the thing about this illness, you can be completely minding your own business and you just get slapped in the face, once again. I will not be able to watch this actress now without feeling annoyed that she said something so irresponsible. I hope she becomes aware of the feedback and realises she was misdiagnosed in all probability. And please not tell the nation again so blithely that ME = nervous breakdown. Because, guess what, it doesn't.

Zarla said...

Such words and well written again! I realise now that i am not the only one who feels these personal slaps in the face and call to arms over whether i am ill with a physical and neurological illness or in dire need of some CBT! Well, I've been through the CBT rubbish twice&look whet it did for me...Nowt!
When will we be able to just be ill, not guilt ridden too!??