In this excerpt from her new book ‘Bleed’ Tracey Lindeman takes on medical misogyny, myths in endometriosis care

We often think of endometriosis as a disease affecting adults.

The reality, though, is that most people suffering from this extraordinarily painful condition begin experiencing symptoms as children.

I know it all too well.

I was extremely independent from a very young age because being alone was my key coping mechanism in a life of parental substance abuse. I learned to be my own companion early on, but I hadn’t been given the tools to be my own advocate. That meant that a lot of my traumas got locked up inside me, only seeping out at inopportune times in inappropriate ways — and that, of course, made me look strange and maybe even crazy.

At the same time as these connections were being forged, I also began suffering symptoms of endometriosis, which made me a fixture in walk-in clinic waiting rooms. I’d been trained that people go to the doctor when they are unwell. But when I would get into the doctor’s office, my words either froze in my mouth, or they came tumbling out in nonsensical jumbles.

What is clear to me now, but was not obvious to me then, is that my family trauma and medical trauma merged early on.

Going to doctors who didn’t seem to care about my suffering reinforced the neglect and abandonment I felt at home. I was desperate to connect and to be understood, but I had been trained to be stoic and to hide personal problems from the outside world. This especially played out in healthcare settings, where I was asked to disclose personal information about my most shameful bodily functions at times when I felt most vulnerable.

At the same time, my menstrual pain just would not stop — and so I kept going back and re-exposing myself to the abuse. I needed a doctor to do something. The more I went back to the walk-in clinic, though, the less they seemed to care. I felt ignored and helpless. I was just a teenager, and there was nothing I could do about a medical system that kept telling me I was fine when I very clearly wasn’t.

As a kid, I had so desperately wanted doctors’ approval and validation, but rarely got even the most basic concern. The older I got, the angrier I felt about that. I developed a new defense mechanism to prevent me from exploding with rage: dissociation.

Being able to mentally escape a room I could not physically leave became a way to lessen the force of impact. From then on, every doctor’s appointment followed the same script: first, mounting anxiety and fat salty tears; then, when my anxiety spilled over the top of my emotional cup, I shut down. I actively avoided eye contact, instead fixating on a benign object in the room. My eyelids grew heavy with hopelessness and my head filled with white noise. This involuntary sequence helped prevent me from freaking out, but it also made it nearly impossible to be taken seriously.

My therapist has since informed me that dissociating is a normal trauma response.

I wonder why more doctors don’t know that.

***

On average, kids start their periods around the age of twelve, although it’s becoming increasingly common for children to get it as young as eight or nine.

Not everyone with endo immediately feels symptoms, but many do; my first period was wickedly awful. The icing on this demonic cake is that you’re bleeding out of your vagina — truly, the most embarrassing thing for a kid to articulate to anyone, let alone a doctor.

Because of that, we may not tell the truth about just how terrible our periods really are. This is how we fulfill the “sick role” early on: learning to defer to doctors in ways that emulate our relationships with our parents, trying not to be too dramatic, trying to appease the adults.

Once that pattern is established, it is very, very difficult to break.

For children who are victims of neglect and abuse, the consequences are even more dire because we have already been exposed to poisonous power dynamics. Government data from Canada shows that girls are more likely than boys to experience family violence (representing 57 percent of victims). Meanwhile, research on maltreatment among LGBTQ youth shows even bigger challenges to “healthy development and functioning” as they grow older.

These realities can have devastating long-term consequences on how a person learns to navigate power differentials.

Child abuse isn’t the only area of trauma that’s relevant here. Experiencing or witnessing other types of trauma can radically transform a person’s ability to cope with certain situations, particularly ones that feel dangerous. Unequal power is integral to intimate partner violence and sexual assault as well, and those affect cis women, trans and non-binary people much more frequently than they do cis men. Trauma also proliferates through exposure to the healthcare system, as it did for me — I came into it pre-traumatized, but some medical encounters added new layers of trauma.

Sometimes it feels like medical professionals — wrapped up in the belief that they give everyone equal treatment — lose sight of the fact that health is not merely a molecular phenomenon but rather is wrapped up in our life experiences.

And yet, if we become adversarial or refuse to follow a doctor’s orders, the chances are good that we’ll be viewed as mentally ill.

Tara, a thirty-six-year-old white woman with undiagnosed PCOS, told me how her suspected PCOS triggered rapid weight gain during her teens, and how that and a bundle of mysterious symptoms saw her start taking antidepressants at age thirteen. On top of all this, an eating disorder put further pressure on her self-image and self-esteem. It was through these experiences that she learned early on that doctors are not to be trusted.

When I ask if she’s ever told a doctor why she struggled with anxiety in medical settings, she pauses, then says she’s told doctors, “This is a system, and in the system, you have more power than me. So, at the end of the day, your job is to help me, right? That’s your job. So we have to have these boundaries, that has to be understood, because I have to fight the system.

“If fighting the system means that I have to fight you,” Tara continued, “then that’s what you have to accept as being part of the system. It’s not personal. I have to get the help that I need.”

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