Monday, January 6, 2020

Prioritizing My Health Means You Won't Be My Doctor, If You're Not Trauma-Informed

[Image is white text on a dark gray background. Text reads: "I need you to stop crying. It's making my job more difficult." -- Some asshole doctors I've had to see. Watermark at bottom is for]
[Image is white text on a dark gray background.
Text reads: "I need you to stop crying. It's making my job
more difficult." -- Some asshole doctors I've had to see.
Watermark at bottom is for]
CW: This post contains discussion of gaslighting by medical practitioners, child sexual abuse, rape, and other topics that may be difficult to read, for some readers.

Today, I'm going in for my first pelvic exam in 14 or so years. During that lapse in care, I've convinced myself that I'm dying of cervical cancer on more than one occasion, but even that fear hasn't prompted me to return to the stirrups.

Not after what happened, last time, in 2006.

There I was, in a horrible gown that did nothing to preserve my dignity, on my back, with my feet at an awkward elevation. The (male) doctor forcibly pried my knees apart as I cried and apologized, trying to explain that I was sexually abused as a child, and raped on more than one occasion as I got older.

In the best way I knew how, at the time, I was begging for understanding and accommodation. I received neither, and I wasn't well enough versed in self-advocacy to stop the exam, and walk out.

Neither was my husband versed in survivor advocacy, as he sat beside me, holding my hand and trying -- unsuccessfully -- to soothe me.

When the doctor told me to stop sobbing because "it's making my job more difficult," my husband doubled his efforts to try to calm me, but they weren't working.

When the doctor said, "This is part of being a woman. Millions of women are able to get this done, every year... Why don't you suck it up, so we can get this done?" I didn't protest.

I dissociated.

I left the appointment feeling as violated as I did after being raped, and vowed never to go back.

And honestly, I wish that was the only time I experienced gaslighting by a medical provider, due to my personal trauma history, but it wasn't.

Last year, after multiple visits to my primary care provider for a string of mysterious -- but serious -- symptoms that included unbelievable fatigue, weakness, migrating piercing pain, and the inability to walk some days, I begged him for a referral to Neurology, or Rheumatology, or both.

I was pretty sure I had fibromyalgia, and I created a list of my symptoms consistent with the condition, as well as evidence I found online linking Post-Traumatic Stress Disorder (PTSD) with fibro.

"I know my body, and something isn't right," I said.

"Well, you ARE at the age (44) when things in the body start changing. There's a good chance this is hormonal," he said.

"No. You don't understand. I can't pick up my toddler. I can't stand at the mirror long enough to put on makeup. I can't lift my wok to cook dinner. This isn't normal."

"Here's what I think," he said. "I think you have a great deal of unresolved stress in your life, and it's manifesting in what we call Somatization Disorder, or Somatic Symptom Disorder. Do you know what those terms mean?"

"They mean, basically, that it's in my head, right? That my mental state is making me physically sick. That I'm literally sick in the head, and it's fucking up my body. Do I have the gist of it?"


"Listen, here's the thing. Other than my body not working, I'm on top of the goddamn world. The legislation I've been working on the last five years finally became law. I'm doing well in my business. I have friends and supportive social connections. I just want my body to work. THIS ISN'T NORMAL."

"I think you're really underestimating the effect that stress has on your body. Especially since you have a PTSD diagnosis," he said. "I'll give you a referral to a psychologist, but that's the only referral I'm going to give you. You haven't reported anything to me that warrants a referral to either neurology or rheumatology."

I started sobbing and crying, uncontrollably. I was so frustrated at not being listened to, and not being heard, I couldn't do anything else. I tried to protest through the heaving sobs, but he interrupted.

"See, this is what I'm talking about. Your emotional response is not in line with the situation. This is a VERY concerning amount of emotion, and it's overwhelming for me."

For him.

My emotional response to being talked over, gaslighted, and unheard was overwhelming for HIM.

I kept the appointment with the psychologist, who spent about ten minutes with me before essentially saying, "Oh, no, honey... This doesn't sound like somatization. You need to see a neurologist or rheumatologist." And then she put in the referral.

A few weeks later, after a ton of tests to rule out other possible causes, I received a diagnosis of fibromyalgia.

To no one's fucking surprise.

I mean, thank God the "gatekeeper" was trauma-informed, and refused to actually BE the gatekeeper my primary care provider had hoped she would be.

I'd been looking for a new therapist, anyway, since my old counselor is awesome, but I had to pay out of pocket, since he doesn't bill insurance. I asked the psychologist if she'd do therapy with me, and she agreed. I really like her, and think I'll continue seeing her for the long haul.

But last year really was a turning point for me, when it comes to what I will and will not tolerate in my health care.

And the number one requirement I have for all providers, now, is that they MUST be trauma-informed.

What does that look like?

Well, for me, it means my history of trauma won't be used "against" me, to overlook real and concerning symptoms.

It means providers won't touch me without warning or permission.

It means I won't be shamed for avoiding certain practices or providers, due to traumatic response.

It means I won't be gaslighted.

It means I won't be made to feel inferior because I struggle to endure invasive procedures that others are more easily able to cope with.

It means my provider will actually listen to me, and not dismiss my concerns, opinions, and wishes, when it comes to my care.

It means that my provider will understand and not be punitive if I have to stop a procedure, take a break, or leave and reschedule.

It means that my providers will be willing to work together for my safety and comfort -- like when my therapist made a point of contacting the midwife who will be performing my pelvic exam to discuss possible triggers, and how to accommodate for them.

It means I will receive care, on my terms, from providers who see all of me... not just my trauma history.

In my opinion, ALL providers should be trauma-informed. After all, a majority of patients they will see have Adverse Childhood Experiences (ACEs), or will have survived physical or sexual abuse or assault.

I deserve better understanding and treatment than what I've experienced in the health care industry, and so do you.

My health is too important to be put on hold out of fear. And so is yours.

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