ILLUSTRATION: THE GLOBE AND MAIL
Tracey Lindeman is a freelance journalist and the author of Bleed: Destroying Myths and Misogyny in Endometriosis Care.
I was a child the first time I told a doctor about my excruciating pain.
Every month since the summer I turned 12, the same intense stabbing pains and clothes-soaking amounts of blood would hit me at full force, making my belly so swollen that the skin felt taut to the touch. Nausea, headaches, exhaustion, brain fog and worsening digestion problems each took a swing at me.
“It’s normal,” the doctor at the walk-in clinic said. “Periods are supposed to hurt.”
It felt like an accusation of weakness. Was I just a complainer, an exaggerator, a hypochondriac? Had I invented my pain? Was it my fault?
As a tween girl already plagued by self-doubt and feelings of worthlessness, these messages reinforced the idea that the problem was me.
The adults around me made it seem so simple – that my pain could be solved logically, like an algebra problem: body minus 50 pounds times three hours of exercise a day plus hormonal birth control divided by 800 calories multiplied by X equals no pain.
No matter what I did, I could never solve for that elusive, mysterious X. The failure took root as I grew into adolescence, then adulthood, leaving me with the ever-present sense that I just hadn’t done enough to make myself heard. I dumped tens of thousands of dollars into diets, gyms, CBD oils and other “cures,” only to have my pain come roaring back.
What I really had was endometriosis and adenomyosis, two profusely painful conditions characterized by abnormal tissue growth. Endometriosis is extremely common; about 5 per cent of the global population, or roughly 400 million people, are estimated to have it. And yet, so many people with this condition – almost all of whom are women – have their pain routinely doubted, downgraded and dismissed.
This is precisely how medical gaslighting works.
The mechanics of gaslighting
“Gaslighting” recently rose to prominence in our collective dictionary, though it’s misused in most circumstances. Its roots are in domestic abuse, referring to how one person in a relationship psychologically manipulates the other into believing that either the abuse is not happening, or that it is deserved.
Sociologist Paige L. Sweet notes in a 2019 American Sociological Review article that gaslighting is particularly effective “when it is rooted in social inequalities, especially gender and sexuality, and executed in power-laden intimate relationships.”
But not only is a gaslightee emotionally abused and manipulated within the relationship, but the gaslighter also often succeeds in telling people around the woman – and it almost always is a woman – that she’s just “crazy.”
The doctor-patient relationship is a deeply intimate one in which one person is expected to follow the other’s orders by confiding private details and undergoing invasive exams while remaining composed, agreeable and even vulnerable. When our symptoms are minimized or discounted entirely, we are not permitted to argue our case. If we do “misbehave,” we may be admonished or, in extenuating circumstances, even de-rostered – punishments for stepping out of line.
These dynamics are everywhere in our encounters with the medical system, but they are particularly acute in invisible conditions that are poorly understood and which primarily affect marginalized people – notably, women and gender-diverse people.
A bigger pain scale?
I spoke to Dr. Jeffrey Mogil, a neuroscientist at McGill University and Canada research chair who has studied sex differences in pain for 30 years.
We spoke about the flawed persistence of the pain scale – that one-to-10 estimation of one’s own pain. Because of the high subjectivity of pain, the scale was invented to help doctors understand how much a patient’s pain interfered with their lives.
What if, Dr. Mogil posited, people assigned female at birth had bigger pain scales than their male counterparts?
That idea isn’t far afield.
As Dr. Mogil explained, “Unless the man in question had a particularly bad injury, or some sort of gunshot wound, or a kidney stone, the woman’s probably been in more pain” because of things such as endometriosis and giving birth.
In some people, endometriosis can be as painful as heart attacks and giving birth. One person who’d given birth to three children told me her endometriosis was way worse than her labours, hands down. And yet, we are expected to go to work and school, take care of households and run errands with no complaint, even on our worst days. This expectation is a powerful catalyst for internalized gaslighting, leading us to minimize our own suffering. Indeed, a new report published this week in the Canadian Medical Association Journal stated that one of the reasons a diagnosis of endometriosis is delayed is the “societal normalization of women’s pain.”
In short, if a man and a woman each give a pain rating of five, it’s still highly unlikely they are in the same amount of pain. It’s also less likely for the woman to be believed; experiments published in pain journals have shown cis women who report high amounts of pain are less likely than cis men to be believed and to receive appropriate treatments.
Medical disbelief tends to be more pronounced among marginalized people; for instance, Black and Indigenous women in pain are often treated as drug-seekers.
These forms of institutionalized discrimination and epistemic injustice are not exclusive to the treatment of endometriosis, certainly. For instance, we see them hard at work in the treatment of long COVID, and how patients’ self-knowledge is not considered credible information. (Perhaps it’s no surprise that the demographics of long COVID skew female.)
Endometriosis is, above all else, an intensely painful condition experienced mainly by people who are unequal in society. It lives at the confluence of systemic sexism, pain downgrading, lack of medical understanding and intersectional discrimination. This toxic brew creates conditions in which it is almost impossible to have our suffering understood and validated by doctors.
It doesn’t help that nearly two-thirds of GPs are “uncomfortable” diagnosing and managing endometriosis.
So often instead, we leave medical offices dejected, with a laundry list of expensive self-help hoops to jump through – yoga, meditation, exercise, psychological counselling, supplements and on and on – each one a nagging reminder that we are, fundamentally, on our own.
A likely story
It took 24 years of fighting for someone to finally believe me.
“You have adenomyosis and stage 4 endometriosis,” the doctor said unceremoniously, pointing to the ultrasound screen. I lay on the exam table, a transducer wand inside me, trying to absorb the diagnosis.
A flood of emotions hit me all at once. I was unsurprised at the diagnosis, having long assumed it was endo. I felt relief and vindication, too; this was evidence I hadn’t exaggerated or invented my pain.
More than anything, I was angry. Furious that it had taken 24 years to be diagnosed. Livid about the rampant gaslighting I’d endured that whole time. Aggrieved about everything I’d missed out on due to chronic pain; all the little pleasures of which I’d been rotely deprived.
Most maddening, though, was knowing that my experience was not unique in any way. In writing my book, Bleed, I came across hundreds of people with stories eerily similar to mine. Like me, most had suffered the consequences of hormonal contraceptives and anti-inflammatories for years – headaches, ulcers, depression – with little to no pain relief. As they got older, they found themselves in increasingly desperate states.
This shouldn’t be acceptable in a world waking up to the harms of misogyny. It’s way beyond time for provincial medical colleges, schools, training facilities, institutions and all health care practitioners to correct course, embrace patients’ truths and treat endometriosis like the excruciating, life-altering condition that it is.