A Hysterical Legacy

Endometriosis and the pain of not being seen

“I’m sorry, but your pain isn’t a priority here.” 

I blink, too drugged to do much else. “Ah, I see,” I say thickly as the supervising doctor leaves. My sibling’s face is a storm, the kind that makes people worry if their third-party car insurance is comprehensive enough to cover hail. Caitlin is the ewe bleating distressed entreaties to the circling crows. Is it a plea or a cry of anguish? I am the lamb waiting to be picked apart by carrion feeders. My pain, usually imminent, is now embalmed, permanent like an oil painting. Doctors have refused to give me anything stronger than endone which has only made me too tired to cry. A nurse pats my cold hand.

“You’re lucky,” she says. “I’m fifty and I’m still bleeding. You’ll be over it by then.”

I’m pretty fucking over it now, Brenda. But then I’m saved by a med student who (thankfully) misreads my distressed eye-twitching for help as ‘come hither’ in morse code. He sidles up by the bed, readjusts his hair.

“So, what are you in for?”

If this man pulled down his pants and had a winky face emoticon tattooed on his nether regions I wouldn’t be surprised.

He’s chatting happily away asking what I do for a job, what my life is like, my interests. He has a clipboard and I wonder if it’s a fuckability questionnaire. I hope I fail it. He latches onto something I’ve said, my tongue thick and fat. He laughs nervously - finally, an inside joke! We totally get each other! He sinks into one hip, settles in for the long haul, there is much adjusting of hair. He is every man in the 19th century writing about their muse dying of consumption. Women wasting away is sexy, after all. I’m bored and tired and pissed off and too busy focusing on the fact that my insides are being torn apart so I do the only thing I can to get away: I begin disassociating.

I’m in the same scene although this time it’s slightly different. Caitlin is no longer by my side and I’m dimly aware my mother is confined to the ER waiting room. It’s lockdown this time, and I am alone in the same cot. The poetic irony is not lost on me. The pain is not the usual sickening throb of endometriosis, this time it’s a vice on my lungs and a knife buried in my diaphragm. Exhausted, I try and desperately explain to a doctor with pursed lips that I think I am having a reaction to codeine. I know what the paramedics have told them. When I collapsed on the bathroom floor and called my mum to say goodbye, they said: ‘Do you reckon it’s just indigestion?”

Eight hours later they confirm it was an extremely rare spasm in between my pancreas and diaphragm caused by a developed intolerance to codeine. The Sphincter of Oddi, I find out days later, the kind of thing they’re meant to keep you in for days over. Lots of tests, lots of monitoring. No one bothers explaining it to me, but I am told in an offhand way that my reliance on heavy painkillers has put me at severe risk of pancreatitis now. This seems less important to me than the inescapable fact that I am now allergic to codeine, the only bulwark against my chronic pain. Defeated, I cry like a child, fleshy and limp under starched blankets in a metal cot.

Was this punishment for my reliance on drugs? Divine retribution? It could never be this easy and I hadn’t deserved ease yet. I should have died on the bathroom floor when mum called the ambulance, should have succumbed to the black spots on my vision that promised a respite from the pain. I was discharged that night against health advice. The doctors tried to give me more codeine as I left. 

Medical Guy is talking again, blah blah isn’t it cool how I’m working on a Marvel film. He loves Marvel too! I shouldn’t have come back to my body. Off I go again.

I’m in a house nine months earlier when two cysts on my ovaries burst at 3 a.m. I’m screaming into the darkness, I think I’m going into shock (doesn’t this only happen in movies?). I’m a cow being branded, my ovaries red hot like iron, convulsing, contracting, acid pooling in my abdomen to eat away at my insides. I am a piece of rotting wood and the termites attack in droves. My partner doesn’t sleep as I slip in and out of consciousness. He keeps vigil the whole night.

I’m the patient in Operation; downturned mouth, bloated body, exposed, red nose like a clown and a child has their grubby fingers jamming the plastic tongs along the raw edges of my body, clumsily digging out the rotten perpetrators. Lights and buzzers go off like ambulance lights and I imagine little pieces, plastic ovarian tokens, being tossed over the child’s shoulder next to a grave of discarded Lego. Rubbish. The game manual says nothing about the patient shivering uncontrollably, eyes rolling and mad, bleating in a sweat-slick panic, “I think I’m dying.” In fact, the plastic patient has no uterus. Not good to have an operation game with those hysterical organs. Sends a bad message to the kids to remove a part that society prizes above all else, the part they are convinced is essential to our being. (It’s not and I want it out.)

Disassociation time over, back into your naughty body you go! I am in my cot next to my sibling again whose hand grips mine.

“Can I ask you some questions about your lifestyle?” another doctor asks (not Medical Guy, he’s bored of me). I know what Another Doctor is about to ask: whether I smoked, took drugs, what I ate, when I exercised, some sliver of evidence to indict me as the orchestrator of my pain. I want to laugh, or scream, but I’m too drugged. I’ve tried it all: I went vegan for a year, I tried meditating on ‘stored trauma,’ I’ve gone without red meat, dairy, gluten, refined sugar, trans-fats, soy-based products; I’ve had a laparoscopy, doctors took me off my period, I’ve gone completely sober; I’ve micro dosed CBD oil, I’ve tried codeine prescriptions (but we know how that turned out); I’ve “bio-hacked”, only doing HIIT certain weeks, yoga others, matching up the foods I eat with my hormone cycles. I’ve tried everything bar a hysterectomy (it’s not off the cards).

The one thing I haven’t tried is forgiving myself. Or realising that the fault for the persistence of this disease and the lack of cure doesn’t rest with me, but with a medical industry that has failed to take my pain seriously. 

Transnational corporations responsible for exorbitant emissions successfully repackaged the climate change crisis as an individual problem, even going so far as to demonise disabled people for using straws for much needed accessibility. Our generation is similarly blamed for our inability to break into the housing market, not because of stagnant wages and inflated interest rates, but because of avocado toast. In the same fashion I have been conned by the medical industry to believe that endometriosis is my fault, that I didn’t try hard enough, that it is my cross to bear. To which I now say is fucking bullshit. 

By this logic, people with broken legs should learn to manage their diet better. Cancer patients are just emotional. Have you tried meditating your osteoporosis away? 176 million people have endometriosis. We were all led to believe extreme pain is a normal part of menstruating which is why diagnoses can take up to ten years. Once that fallacy is revealed we are sold another lie: that this lifestyle of languishing, waiting on the imminent pain that we can barely manage, that society can barely tolerate, is normal. Eve’s original sin, the pain she was cursed with, the hysterical woman, they deserve pain, they’re making it up, they must pay, she’s just emotional, put up with it, get on with it, someone’s hormonal, aren’t they?

What should I do to be taken more seriously? Should I ride naked, breasts bare into battle like Boadicea? Should I wear pantsuits with a shirt made by illegally underpaid workers bearing the title “Girlboss” and cosplay as a man? Bully my way for a modicum of respect and due attention? Men have not had to advocate for heart problems or prostate cancer to be taken seriously, but it seems Man looks out for Man by default. Never mind hysterical women.

I can’t forgive Freud. Still can’t get over his theories on hysteria. In fact, I want to knock him out. Wrestle him onto a table and x-ray his insides, see how he likes it. So perhaps I am wicked. A shrew that needs taming, the mother of original sin, a witch bent over a cauldron and cackling as she is dragged to the stake. Freud’s legacy of ignorance and misogyny lives on like a particularly nasty strain of herpes. Like the pandemic there are different strains: hysteria; menstruation shame; the racism of dismissing Black and Indigenous women’s pain; ableism ignoring endometriosis’ high rates of co-morbidity and the toll of chronic pain on the body; transphobia and homophobia denying trans and gender non-conforming folks who have endometriosis safe medical care. It affects us all. These viral strains move insidiously, lighter than air, faster than light. It distils in me like a tincture of shame.

The shame is not just relegated to how I’ve been treated by medical professionals. I’ve spent years believing I was a fraud. Bosses, colleagues, friends, ex-partners, doctors, nurses, teachers, office staff watching me, eyes narrowed with suspicion as I skulk off, hunch-backed, to the toilet. It has the same mimetic effect as a high school student playing an eighty-year-old in a school pantomime. I can never shake the feeling that I am performing my pain, the shuddering and the sweating and the incessant rocking making me an overzealous mime. I hide in toilets where I can cry and retch and exist without the crows watching me. I don’t have to answer the questions if no one can see me: what if I’m making it all up?

My endo is seen as a phantom disease, something for attention, an invisible spectre causing havoc in the town village only to be caught by the Mystery Gang, and I, unmasked as a fraud, curse the meddling kids who discovered my ruse. So I make sure no one ever does. I’ve hidden my condition to varying degrees of success. I never mention it in job interviews. I spend the first few months bright-eyed, drugged up, strained smile, oh God, I hope they don’t find out. Until one day the ruse drops. The band pauses mid overture (a string shrieks tunelessly as the bow clatters loudly to the floor) and I wipe the stage makeup from my face, streaked now like war paint. It’s Arthur Miller’s The Crucible and a battle begins as I fight to undo the fantasy of my own making; cross-examinations, inquest-like confessionals, my body unable to keep up with the able-bodied character I’ve created.

The audience’s first response is anger at the sudden change, then disappointment which fades to derisive resentment. They boo and I am chased off the stage, the audience smug now they have caught out the villain hiding in plain sight. Someone in the crowd, a former boss of mine, shrieks that I should just get a hysterectomy. A few other spectators cry out too, old colleagues and managers, delighted they’ve finally witnessed what they always suspected to be true. They grow quiet as the Greek chorus enters to perform Prometheus Bound. I feel a kinship to the god and watching his demise from the wings slakes a masochistic thirst within me that believes I still deserve pain.

I’ve always wondered why the gods punished Prometheus. Humans need fire so why is having it so wicked, so naughty? Zeus is in a lab coat and he’s hidden the primordial spark deep within the clouded mountain. Too dangerous. Too wild. He is delivering divine retribution for Prometheus’ crimes and I’m begging to spare him. A life without fire is darkness, is despair. He considers me for a moment although it’s Athena and Hera who are staring at me. “Don’t listen to her,” they whisper in his ear. “We had to endure it, so can she.”

The play changes as a chorus member solemnly passes Prometheus a crow’s mask, lacquered and garish with an obsidian sharp beak. He croaks at the hungry birds, warning them to stay back, before he buries his beak into the soft flesh of his belly and rips out his own liver. The audience erupts into deafening cheers, ignorant that the blood dripping onto the floor is his own. 

My family is exhausted too, punished to watch from the stalls. They remain silent and unmoving as the actors take their final bows and the crowd shuffles out. Someone finally thinks to drag a bleeding Prometheus off the stage. My family do not heckle or call across the theatre. Instead, their silence is as much the solemn quietude of wretched helplessness as it is the holy selflessness of holding space for me. I wish they understood the depths of my gratitude. The 6 a.m. drives to the hospital, the hours spent in waiting rooms, the hugs, the talks, watching me sleep to make sure my ovarian cysts don’t burst again.

I have no medical professionals to thank, no cure to tout, no words to utter except that I endure. I’ve managed it best I can, I’ve learnt to demand acceptance instead of bashfully asking for it. I’m still fighting to be taken seriously and a recent bout of demeaning and demoralising trips to the gyno department at RPA means I have to start all over again. I’m currently in a workplace of women who take me seriously. I disclosed it in an interview for the first time (after much advocation from my partner) which was met with understanding although I can still feel leftover paranoia gnawing at me.

I have a strict diet which has helped mitigate some of the pain but it never really goes away. There are still months where I scream into a pillow, there are months where I’m given a reprieve and I count myself lucky because next month might not be so forgiving. And despite the doctors and GPs and nurses I’ve spoken to, I am an expert on my body. I’m an expert on my pain. When the triage nurse asks me (half conscious) to describe what the pain feels like, I say: ‘Like battery acid.’

“Huh, that’s weird. What does that mean?”

“It means I can feel my insides eating themselves.”

“I’m sorry. I’m still not sure I understand—” she breaks off. There’s a commotion outside. A man is walking around demanding morphine, he’s in a lot of pain. “Sorry, give me a moment,” she says before rushing out and helping the man through the ER doors.

When she comes back she sighs, punches in a couple of sentences. Sends me back to the waiting room. When I’m collected two hours later, delirious with pain, another nurse sets me up in a vinyl-covered arm chair. She fusses around with my drip.

“What are you giving me?” My speech is slurred.

“Just some fluids.” She hands me a little plastic cup of paracetamol and ibuprofen, stuff I’ve got in my kit at home. She smiles at me. “That should do the trick.”

I lay back. I want to scream. I let my head loll to the side and I see the man, the one from before, in the chair next to me. His eyes are closed, his face slack. I can hear the doctors talking about his morphine dose and I want to ask him what he did to be taken seriously.

But he’s too blissed out to hear me.

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