It is I: The incredible shrinking zebra

I’ve been six feet tall since tenth grade.

At first it was daunting: the gangliness of newfound height; the very clear divide between me and all of the other women in my family over whom I towered by a minimum of five inches. But as time wore on, it became a part of my identity. I was properly six feet tall. It was a nice, resolute height. None of this nine and three-quarters or eleven and a half inches. I was solidly and unequivocally six. feet. tall.

Until I wasn’t.

This past December, I was meeting a new doctor. Part of the how-do-you-do involved taking my height and weight. But when I stood against the wall to be measured, I heard a number I wasn’t expecting: 180 cm. I joked with the nurse about my apparent shrinking and went into the next room thinking little of it.

Then I met another specialist in February who, once again, measured me and confirmed that I was now 180 cm. A final measurement a month later verified the first two. Apparently I had done something that I previously assumed only happened to the most wizened nonnas of my childhood: I had shrunk a full inch. In my thirties.

This experience relates directly to why I was on a tour of doctors’ offices over the past five months. On the day of the first shortened height measurement, I met the gynaecologist who would finally diagnose me with premature ovarian insufficiency. It had taken seven years to get to this point.

After introducing herself, my gynaecologist asked me if anyone had discussed my most recent blood work with me. My neck immediately felt hot and I worried that I, once again, would be leaving with a diagnosis of hysteria and a treatment of stern finger wagging. I blurted out that no one had gone over my test results with me, but that I had five years of lab results with me, in a handy spreadsheet, if she needed more proof that I was sick.

She breezed past my offer and explained to me that I had almost no estrogen or progesterone in my body any more. I was, by this point, post-menopause. Given that my mother had died at 56 from a gynaecological cancer, the clock was now ticking to get my ovaries out of my body before they could “go bad”. She explained who she chose as my surgeon and reviewed the various steps of my new hormone replacement regimen. And off I went.

I got maybe twenty steps down the sidewalk before I began to cry. It was a cry of every kind of tear, a real all dressed chip of emotional experiences. I was first and foremost relieved to have a doctor who saw me, who saw my illness, and who provided me with a comprehensive treatment plan. After seven years, I finally had a doctor who was invested in keeping me alive. And that realization crashed into my profound anger at every single doctor I had seen in those seven years who talked down to me, dismissed me, diagnosed me with anxiety (without conducting any kind of mental health assessment), or pushed to put me on the pill instead of investigating what was going on. Which dovetailed into my questions of oh my god, what is going on? Am I going to be okay? Am I going to die like my mom? Like I said, every kind of tear was leaking out of my face.

Premature ovarian insufficiency (POI) takes, on average, six years to diagnose. And that fact is only surprising if you are not a lady* who has had to seek medical attention. I am confident that the years people wait to receive this diagnosis is not because the disease is difficult to pin down, rather it is because the distrust of women by health professionals is so high that illness is not acknowledged until it reaches an extreme or a pinnacle. When I was in perimenopause, I was told it was “just stress”. When I was in menopause, I was told that ladies miss periods and maybe I wasn’t sleeping enough. I endured being shrugged off for seven years, all the while getting sicker.

Because that’s the deal with POI. It’s not just a matter of suddenly being infertile and sweating through your bedsheets on the reg. The bottoming out of key hormones decades before they are supposed to wind down has very real consequences. The life expectancy of someone with POI is on average ten years less than their menstruating-until-51 counterparts, mainly due to the damage that the loss of hormones does to your heart. I am also at increased risk of dementia and Parkinson’s. And I am at risk for bone density loss, which brings me back to the recent revelation that I have, in my thirties, already shrunk an inch.

And here’s the thing. I fully understand that only 1% of cis women will develop POI before they turn forty. I get that it is rare. And I recognize that doctors are taught that when they hear hoofbeats, they should think of horses not zebras. Sure. Okay.

But doctors, what happens when tests and blood work don’t point to a horse? Why is the next step so often to dismiss the patient outright? When you shrug off women’s experiences and their very real observations of change in their bodies, you are dismissing the very hoofbeats that brought these patients into your office.

The adage is to think of horses first, not to deny that zebras exist.

For seven years, I heard hoofbeats. I felt them in every part of my body. And for seven years I dealt with the humiliation, hurt, and self doubt that came from medical professionals telling me that my experiences were not real.

There is nothing that I can write now that will fix the past seven years. But if there is one thing I can leave with any health care professional who reads this, it is this: when you hear hoofbeats, sure, think horses. But if it turns out to not be horses, it is not an acceptable solution to say that the hoofbeats probably didn’t exist in the first place. Disbelieving women is denying women care. All five feet and eleven inches of me are here to remind you that zebras exist. Some of us might be shrinking, but we exist. And you owe it to those of us in your service to acknowledge our experience and help us find answers.

• I want to recognize that trans, nonbinary, and gender expansive folks have very awful experiences with the health care system, experiences which are often explained by the saying “trans broken arm syndrome”.