How medical gaslighting leaves endometriosis patients desperate for help

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Tracy Lindemann is a freelance journalist and author Bleed: Debunking Myths and Misogyny in Endometriosis Care,

I was a child when I first told a doctor about my excruciating pain.

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Every month since the summer I turned 12, the same intense stabbing pain and blood-soaked volume would hit me with full force, causing my stomach to swell so much that the skin felt taut to the touch. of nausea, headache, tiredness, brain fog and worsening digestive problems each took one Swing on me

“It’s normal,” said the doctor at the walk-in clinic. “Periods hurt.”

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It felt like an accusation of weakness. Was I just a complainer, an exaggerator, a hypochondriac? Did I Invent My Pain? Was it my fault?

As a tween girl already plagued by feelings of self-doubt and worthlessness, these messages reinforced the idea that I was the problem.

The adults around me made it look so simple—that my pain could be solved logically, like an algebra problem: body minus 50 pounds of exercise three hours a day plus hormonal birth control multiplied by 800 calories. There is no pain on doing X.

No matter what I did, I could never settle for that elusive, mysterious ex. As I grew through adolescence, then into adulthood, failure took root, forever leaving me with the feeling that I hadn’t done enough to make myself heard. I spent tens of thousands of dollars on diets, the gym, CBD oil and other “treatments” only to have my pain come back.

I actually had endometriosis and adenomyosis, two extremely painful conditions characterized by abnormal tissue growth. Endometriosis is extremely common; About 5 percent of the global population, or about 400 million people, are estimated to have it. And yet, so many people with the condition – almost all of whom are women – are routinely doubted, downgraded and dismissed by their pain.

This is exactly how medical gaslighting works.

the mechanics of gaslighting

“Gaslighting” has recently risen to prominence in our collective lexicon, although it is misused in most circumstances. It has its roots in domestic abuse, referring to how one person in a relationship psychologically manipulates the other into believing that either the abuse is not occurring, or that it is deserving.

In 2019 sociologist Paige L. sweet notes American Sociological Review Articles That gaslighting is particularly effective “when it is rooted in social inequalities, especially gender and sexuality, and is executed in power-packed intimate relationships.”

But not only is a gaslighter emotionally abused and manipulated within the relationship, but the gaslighter also often succeeds in telling those around the woman – and it is almost always a woman – that she is just is “crazy”.

The doctor–patient relationship is a deeply intimate relationship in which one person is expected to obey the orders of the other, while remaining calm, agreeable, and even vulnerable. When our symptoms are minimized or completely discounted, we are not allowed to argue our case. If we “misbehaved,” we could be admonished or, in extenuating circumstances, even de-roasted—the penalty for getting out of line.

These dynamics are everywhere in our encounters with the medical system, but they are particularly acute in invisible situations that are poorly understood and that primarily affect marginalized people – in particular, women and gender. Miscellaneous people.

A big pain scale?

I spoke with Dr. Jeffrey Mogil, a neuroscientist with the McGill University and Canada Research Chair who has studied sex differences in pain for 30 years.

We talked about the flawed persistence of pain scale—that is, rate your own pain on a scale of one to 10. 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 said, those assigned to females at birth had greater pain than their male counterparts?

That thought is not far off.

As Dr. Mogil explained, “Unless the man in question has a particularly bad injury, or some sort of gunshot wound, or a kidney stone, the woman is probably in more pain”. Due to things like endometriosis and giving birth.

In some people, endometriosis can be just as painful. heart attacks And give birth A man who had given birth to triplets told me that her endometriosis was worse than her labor. And yet, we are expected to go to work and school, take care of the household, and function without complaint, even on our worst days. This expectation is a powerful catalyst for internal gaslighting, prompting us to minimize our own suffering. Indeed, a new report published this week in the Canadian Medical Association Journal says that one of the reasons for the delay in diagnosing endometriosis is “Social normalization of women’s pain,

In short, if a man and a woman each give a pain rating of five, it is still highly unlikely that they are in the same amount of pain. A woman is also less likely to be believed; experiments Pain published in journals has shown cis women who report high amounts of pain are less likely to be trusted and receive appropriate treatment than cis men.

Medical mistrust is more pronounced among marginalized people; For example, black and indigenous women are often treated in pain drug addicts,

These forms of institutional discrimination and pandemic injustice Certainly not exclusive to the treatment of endometriosis. For example, we see them working hard to treat COVID over a long period of time, and how patients’ self-knowledge is not considered reliable information. (Perhaps it’s no surprise that the demographics of the long COVID oblique woman,

Endometriosis is, above all, an extremely painful condition which is mainly experienced by people who are unequal in the society. It lives at the confluence of systemic sexism, minimizing pain, lack of medical understanding, and interpersonal discrimination. This toxic brew creates a situation in which it is nearly impossible for doctors to understand and validate our suffering.

it almost doesn’t help two thirds gp The diagnosis and management of endometriosis are “uncomfortable”.

So often instead, we leave therapy offices frustrated, with a list of expensive self-help hoops to jump through—yoga, meditation, exercise, psychological counseling, supplements, and so forth—each one an annoying reminder that we’re basically Basically, on their own.

a possible story

It took 24 years for someone to believe me.

“You have adenomyosis and stage 4 endometriosis,” the doctor said nonchalantly, pointing to the ultrasound screen. I lay on the exam table, a transducer stick inside me, trying to absorb the diagnosis.

A flood of emotions hit me all at once. I was shocked at the diagnosis, long assuming it was endo. I also felt relief and confidence; this was it Proof I didn’t exaggerate or invent my pain.

More than anything, I was getting angry. Angry that it took 24 years to get diagnosed. I endured that whole time, being angry about the massive gaslighting. sad about everything I missed because of chronic pain; All the little pleasures that I have been completely deprived of.

Most disturbing of all, however, was the realization that my experience was by no means unique. writing my book, bleed, I met hundreds of people whose stories were similar to mine. Like me, most faced the consequences of years of hormonal contraceptives and anti-inflammatory drugs—headaches, ulcers, depression—with little or no relief from the pain. As he grew older, he found himself in an increasingly desperate state.

This should not be acceptable in a world awake to the harm of misogyny against women. It is beyond time for provincial medical colleges, schools, training facilities, institutes and all health care practitioners to correct course, embrace patients’ truths, and treat endometriosis like an excruciating, life-changing condition.