Saturday, January 27, 2018

Another way in which we need to believe women...

There is a part of our culture that I simply cannot wrap my brain around. Women, who can go through child birth, who can manage a household and a full time job, who are so often caregivers for others, are so often treated as hysterical when it comes to their own bodies.

This is something I am personally well-acquainted with. I know what it is to be absolutely sure that something is wrong, but struggle to make my doctors believe me.

When I was 13, my pediatrician told my mother to take me to a psychiatrist because he believed I was faking a pain in my right side for attention. He had run the usual tests and found nothing. My mother was indignant, switched doctors, and continued to believe me even when I started to doubt myself. Months later, exploratory surgery revealed that I had a blockage in my appendix. Though it showed on no tests, the condition was serious and the surgery may well have saved my life.

Later in her life, my mother would be put on antidepressants by a PCP who couldn’t come up with an explanation for why she had broken half a dozen vertebrae over the course of four months. Nothing showed on tests, so he didn't believe her. To this day, I wonder if she would have reached her cancer diagnosis earlier had he sent her to a specialist earlier. I wonder if she would have lived long enough to meet my son had she started treatment before the cancer progressed so far.

At age 30, A GI told me that, as an overweight smoker, I should just expect to have stomach aches. 
He didn’t believe me when I told him I knew something was really wrong with me. While I should be grateful that his laziness and insensitivity pushed me to quit smoking, instead, I remain angry that his indifference meant it took even longer for another doctor to diagnose me with a rare disorder that, like many other things, isn’t easy to find through bloodwork and imaging.

This isn’t just me. It wasn’t just my mom. Study after study shows that women are not believed when it comes to their own pain. Here are just a couple of examples:

Huffington Post quotes a “study found that female patients more likely to have their pain described as emotional or psychogenic.”

The Independent discusses how “Medical professionals take longer to address women’s pain, and do less to address it when they eventually do, even when they have the same symptoms as men.”

The Atlantic cuts a little closer to home by sharing the story of a woman who “has been reckoning in a sustained way about her own fears about coming across as melodramatic.

That woman could be me.

I had a lot of time to think last night. I didn’t sleep much for a simple and frustrating reason: I was in too much pain. I tried every position, every setting on my heating pad, and everything in the medicine cabinet that I thought might help, but I could not lessen the pain enough to sleep.

Weirdly, though, the pain was a relief.

In March, I first had this pain. I was evaluated for kidney stones and dismissed by a PA that didn't ask a single question. She told me to go to the ER if I "thought" I was in pain. She didn't believe me. 

Later, I was sent to the ER by my GI. There, I was made to wait 14 hours and offered Tylenol for my pain. The triage doctor didn't ask me a single question. She looked at my bloodwork and didn't believe me. 

My current GI, who always believes me, now suspects that my current pain is unrelated to my chronic GI condition. Over the summer, he called my OB/GYN and suggested I have an exploratory laparoscopy to look for endometriosis. Though she was skeptical, my OB/GYN put me on medication to treat endo. My pain vanished. As soon as I stopped the medication, the pain returned.

Monday, my doctor told me it was time to do the surgery and see if I truly have endo. My reaction was to cry.  

As I talked through this with my husband later, he was baffled as to why I was even worried.  He pointed out that I’ve never been wrong when I suspected something was wrong with my body before. It’s hard to explain that constantly fighting to get people to believe you can make it hard to believe yourself. The truth was, on Monday, I had felt OK for a few weeks and started doubting my own memory of the severity of the pain. Thus, last night I felt relief in reliving it and confirming that it is, in fact, debilitating. 

In the last six months, I have considered seeing a psychiatrist. I have googled Munchausen’s Syndrome and Hypochondria to see if either explained my experience. I have pondered whether I am making it up without even realizing it.

I have internalized not being believed to the point of questioning my own sanity.

Perhaps the surgery will reveal something new. Perhaps it will not. But last night, in my many hours of wakefulness, I promised myself that I would not stop seeking an answer if I don’t find one on the operating table. I promised myself that I would always believe me.

Women are fierce and capable. Why is it so hard to convince doctors that our pain is valid? That we know our bodies and are capable of sounding the alarm when need be?

It takes an average of ten years to diagnose endo despite that fact that 1 in 10 women has it. 

Ten percent of women have it, and yet it takes a decade to be diagnosed. Endo doesn't show on imaging or blood tests, and so often, women complaining of pelvic pain are made to believe that the pain is normal, or that they are exaggerating its severity. 

It takes a decade, I think, in part because women aren't believed. 

I am encouraged by the fact that we are FINALLY started to believe women in matters of harassment and assault. I am absolutely not comparing my experiences herein to those of the brave women helping to build this watershed moment in our society- the scales don’t even compare.

But I am asking… can we consider believing women when it comes to their bodies, too? I think the start is for people like me to stop downplaying our experiences because we don’t want to be perceived as hysterical. 

The start is all women promising that we will believe each other, and ourselves. 

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