On October 25th 2017, a surgeon apologised to me. Not just any surgeon, but my surgeon: the one who’d been tasked with removing my Angry Internal Organ. The day after the operation he arrived at my bedside clutching a small sheaf of papers, and began to say he was sorry.
I’d presented at A&E at the beginning of March with a set of symptoms which I was swiftly told were “impossible” because they didn’t spit out an immediate answer from the computer. I’d then run the gamut of tests: bloods, ultrasounds, cameras in the belly. The guy who did my first ultrasound said things didn’t look good, that I should be taken in for surgery as soon as possible. He sent me downstairs to follow up with the person responsible for admissions, and somehow in the 20 minutes it took me to get down there in the lift (I could only walk very slowly, being in too much pain), his concern had been translated into “stick her on a waiting list and hope for the best.”
Eventually I did have the surgery, eight months after I should have done. When the surgeon came to apologise, he said I should have been rushed immediately into surgery from A&E. “It’s a wonder you survived,” he told me, and asked me to sign a form so they could take my Angry Organ away and study it in a lab. They’d like to see how I managed to hold it together, he explained: literally, as it turned out. The operation had taken hours longer than it was meant to, because the organ had melted in his hands when he’d tried to remove it. This had never happened to him before.
Among the sheaf of paperwork were some pages explaining the complaints procedure, which he encouraged me to follow. He also said I must have underreported my levels of pain when I first presented. Perhaps this was true, but I’d been deliberately trying to overreport them since I know I have a high pain threshold. Maybe, just maybe, it wasn’t that I’d underreported, but that they hadn’t fully listened?
Once Apologetic Surgeon had removed Angry Organ, the others settled down a bit, but not entirely. I told everyone I was fine, because it’s easier than having them constantly asking me questions I don’t want to answer. But last month my insides starting burning and churning with this twisted sort of crampy pain that made me think perhaps I should visit the doctor. I called 111, who told me they’d push me to the top of the queue if I went back to A&E. So I did, almost a year to the day after last year’s ordeal began in the same place.
The doctor on duty listened while I explained the symptoms I was having, and listened some more when I told him about the apologetic surgeon and what he’d said about pain levels, and the way no one had listened to me before even though they should have. He smiled, took off his glasses, cleaned them, placed them back on his nose, and said rather patronisingly: “What do you think is wrong with you?”
I told him I didn’t know. He asked me to get on the examination table, which I did, and he followed the usual pressing and prodding and tapping procedure which now seems like an inevitable part of my year.
He was running tests while he did this, one of which brought back a result that said I had an infection, for which he gave me antibiotics. He handed me the prescription and told me where to fill it. Then he turned back to his desk, effectively dismissing me.
“But what about the thing I came in here for in the first place?” I asked him.
“I don’t know,” he replied, “it’s not the infection. Probably some nerve damage. Would you like me to write you a prescription for codeine?”
Having spent most of last year off my face on painkillers, no. I wouldn’t.
He told me to go back to my GP and ask to be sent for scans. The last time I did that, my GP said I probably had “white coat syndrome” and refused to send me to the hospital, even though the hospital had been the ones who’d requested the scans in the first place, saying they wanted to investigate further.
I made an appointment with my GP. When the day came, I cancelled it. The thought of living with ongoing pain was somehow less exhausting than the thought of fighting my way through the endless gauntlet of medical professionals dismissing me for months, and then apologising when they realised how close to death I’d been.
I wish I could say last year was the first time this had happened. It wasn’t. It was at least the fourth.
When people ask how I am now, I generally say I’m fine. Because I basically am: I can get up, function, eat again (most of the time), drink wine again (yipee), even travel abroad and work long days at digital forensics conferences without collapsing on the floor. Except on those increasingly regular days when my insides cramp and it feels like there is something wrong. But there’s no point talking about that, because people don’t understand it and I can’t be bothered to explain it, and nothing’s going to happen about it until I’ve spent several months going back and forth to hospitals and doctors and test centres, at which point they’ll finally find something which still won’t be the end of it.
Abby Norman gets this.
I was exhausted in a way I couldn’t seem to explain properly to anyone. It’s an oppressive feeling: it’s like gravity is boring down on you… That kind of awareness of physical fatigue causes a parallel mental fatigue… every thought seems to take a disproportionate amount of effort.
Ask Me About My Uterus is the story of Norman’s struggle to have her pain recognised and treated by medical professionals. Being from the US, she had the added concern of not being able to afford medical treatment; something I managed to avoid by happening to be born in the UK, which has the NHS (for now, at least).
It is a story that will resonate if you have endometriosis, because that’s the condition around which the book centres. But if you’ve ever suffered from an ailment that doctors just didn’t quite get, or been told that it’s “probably all in your head” only to discover later that not only was it not just in your head but very much all over your body, trying to kill you, then you will also feel understood when you read this book.
It’s so much more than just an autobiographical account of an illness, though. In Ask Me About My Uterus, Norman discusses the research she’s undertaken about her own condition, but also talks at length about medicine throughout history, and how women have struggled to be listened to for at least as long as medical records have been taken. Perhaps my favourite line in the book is the one in which Norman describes Hypatia as “a Greek mathematician and astronomer in the fourth century, a woman who did not suffer fuckboys gladly.”
I can imagine some readers wishing the book were less autobiographical and more medical research focused. That was certainly what I was expecting when I started to read it, and at the start I was a little thrown off by the passages about Norman’s childhood. But as I settled into the writing style, I realised that the strands all wove together in a way that made their inclusion necessary: the fact that Norman’s childhood was (to put it mildly) difficult led some medical professionals to view her as potentially “hysterical”, dismissing her symptoms as probably psychosomatic.
The thing is, we expect medical professionals to be good at… well, medicine. We expect that when we go to the doctor, they’ll be able to tell us what’s wrong with us and prescribe an appropriate treatment; or if they can’t, that they’ll be able to refer us to someone who will. At the very least we expect them to try. What we don’t expect – but perhaps sadly should, especially if we’re women – is almost immediate dismissal.
The fact that dismissal is what we’re often served ironically ends up having a significant psychological impact, certainly if it happens often enough. And in turn that psychological impact may worsen our original symptoms, because illness + stress =/= less illness. Not only that, though; it can also make us question ourselves. Reading this passage on page 182 felt like reading the inside of my head:
My head was already full of so much, I thought as I stepped out of the shower, sinking down to sit on the edge of the tub. I couldn’t imagine that my brain had the bandwidth necessary to construct some kind of elaborate medical crisis. Maybe if it had only lasted a few weeks, I could have accepted it as some kind of glitch in the matrix, but it had been going on for years now. I sat there dripping, growing cold as the fog dissipated from the room, and I was paralyzed with fear: What if I was lying, to everyone – even myself? What if the pain wasn’t real at all, what if it never had been? Had Dr. Wagstaff been right all along? Had the trauma from my childhood, which I had diligently worked to resolve, which I had taken copious antidepressants to dull the ache of, somehow escaped my brain and taken up residence in my bones? Could anguish live, truly, in your actual heart, and not just your metaphysical heart? Was my body shutting down in response to years of being unwanted and unloved, of being alone and unaccounted for? Had my brain succeeded in convincing my body that it had no right to live? Could emotional pain actually cause your physical body to slowly rot away, like some sort of dramatic, psychological consumption? Was I really losing my mind rather than my body? Was I a Freudian hysteric with an iPhone?
Spoiler alert: she wasn’t. Nor was I. And probably neither are you, if you’re reading this and thinking how relatable it all sounds.
I’m definitely going to buy multiple copies of Ask Me About My Uterus for my friends who have had similar experiences of allegedly “impossible” symptoms that have been repeatedly dismissed by doctors. (At one point, a friend and I joked as we were walking down the street slightly ahead of the rest of our group that perhaps a bus would come speeding round the corner and knock us over. But only us, not the rest of the group, and probably it’d be a bus that for some reason no one else could see, and the bus wouldn’t be normal but somehow impossible, and no one would believe we’d been run over by it even as we lay broken-limbed on the road. A lot of people like us have dark senses of humour. It helps to get through the day.)
As well as copies for people who’ll find it relatable, however, I’m also tempted to send one to my doctor. Anonymously, of course: I wouldn’t want to be one of those people who dare to make a fuss.
Though it’s nice to read something relatable and feel less alone in a world of humming machines and dismissive doctors, I’d rather recommend this book to medical professionals than to their patients. Perhaps if Ask Me About My Uterus and the studies it quotes were required reading for everyone in the final stretch of medical school, we would have fewer doctors who dismissed us and more who listened with a view to understanding, and ultimately healing. And perhaps if all the doctors who saw me last year had read it the night before, my surgeon wouldn’t have had to apologise and I wouldn’t have basically spent ten months in the bath.
Ask Me About My Uterus was published by Little, Brown today: 29th March 2018.
I received a free copy of an advance proof from the publisher in exchange for a review. In reality it’s difficult to tell if this affected my view of it, because arguably we’re all affected by every experience we have, but suffice it to say I’ve trashed review copies I haven’t liked in the past, so I doubt it makes enough of a difference to skew my viewpoint on it.