A conversation on social media got me thinking about my experiences with the medical profession whilst I’ve been ill. My initial assessment was: wow, I’ve been so lucky.
Then I thought a bit harder about how I’ve been treated and what I’ve been told. Here are a few snapshots.
A locum GP, very early on: “I really doubt you’re any more tired than I am – it’s normal to feel this tired,” (but it isn’t).
Another locum GP, still very early, when blood tests had shown that I was recovered from my mystery virus; I was back at work but no less tired and suffered a two-week hangover after trying to go to the gym: “It’s normal to feel run down for a while after a virus. That’s all it is,” (but it wasn’t).
Specialist doctor (actually a psychiatrist) at an NHS CFS unit: “This is what happened. After you had recovered from your initial virus, you started focusing more and more on your symptoms,” (but I didn’t, and I didn’t understand that he was trying to tell me that it was this ‘focus’ rather than the symptoms that had perpetuated my illness, and in any case, I thought that he knew best, so I didn’t correct him).
A kind and clever GP, much later, when I’d been ill for nearly two years and had just suffered a catastrophic relapse: “Don’t worry, you won’t stay sick, because you’re nothing like them.” (She meant people who have had ME/CFS for years or decades; she meant that I had a good attitude; she meant that it was their fault, if they didn’t get better. But, well, here we all are.)
I’ve also had two wonderful and wonderfully helpful GPs; I’ve had private specialists who really understand my illness and who have helped me a lot. In the main I’ve been lucky, but I’ve also seen glimpses of the denial of patients’ experiences that some doctors perpetuate.
Let me tell you about the conversation that started this train of thought. It was between three fellow ME/CFS sufferers, and each seemed surprised to find that what they’d thought was a symptom unique to them was in fact common to all three.
The symptom in question is a sort of sleep disturbance. It sounds horrid to experience, but I suspect it’s not terribly uncommon. The first person I spoke to about it in real life turns out to have experienced it too – and they don’t even have ME.
So far, so whatever. We all know sleep is a problem for people with chronic illness. Here’s the thing though. My friends were simultaneously relieved and shocked to find out they weren’t alone.
Why? Well, the first had been nearly sectioned after she had talked to her doctors about this. The second had been threatened with electric shock therapy, and, you’ve guessed it, sectioning again. The third – in some ways this is the best one – hadn’t dared mention this particular symptom to any doctors, as she was scared of what they might do. Rightly so, it turns out.
I spend most of my time being grateful that the system has treated me so well; that, in the main, it hasn’t told me I’m not sick, that I’m either crazy or I’m pretending.
But maybe it’s time to get angry. My friends were subjected to Victorian practices that go well beyond mere gaslighting – as if that weren’t bad enough.
These are smart, warm, funny, self-aware women, each of whom I am proud to call my friend. Let me repeat again what happened to each of them: two nearly sectioned, one threatened with electric shock therapy, one too frightened to speak out at all.
I am full of grief and outrage for each for them.
I’m so lucky that the doctors, by and large, believed me. (This is partly, but not purely, due to being relatively recently diagnosed.)
I’m so lucky that I got sent to private specialists who get it, really get it, and have helped me so much.
I’m so lucky that work said, OK, you can stop, just tell us what you need and when.
I’m so lucky that only one person in my private life tried to gaslight me.
In reality, I don’t just feel lucky. I feel relieved, and, if I’m completely honest, still a bit scared each time I meet a new doctor (or indeed, a new anyone) of how they will respond to my condition.
Actually, I’m a lot scared. What happened to my friends, only a few years before me, is terrifying.
Even now, young people with ME/CFS are forcibly removed from their families and locked up in psychiatric wards – go read up on Karina Hanson, if your heart can bear the weight of the cruelty.
To finish, here are a few thoughts from Edward Shorter on the subject of CFS. Edward Shorter is not a doctor; he’s an historian. In 2015 he described CFS patients as “moaning and groaning victims”, “pouring out tales of woe” (good to know you liked my blog sir!), indulging in “a kind of delusional somatisation”. He also stated that “there have been no breakthrough findings of organicity…and there never will be,” thus revealing himself to be something of a chump – but a dangerous chump, nonetheless. Just this month, the NIH – the US body responsible for funding research into the condition – invited him to speak to their CFS Special Interest Group: that is, to the very researchers being enlisted to work on the disease. (Guess what Mr Shorter? I’m an historian too, and I can tell you, history is not going to judge you kindly.)
Even now, in late 2016, with all that we know and all that we need, the NIH thought it right to make space for this rigid and cruel denialism.
It’s time to stop being scared. It’s time to get angry.
(With thanks, love and admiration to KB, EF and FJ)