In the U.S., Being a Woman Is a Pre-Existing Condition

As I, a 25-year-old woman, write this, I am finally making progress on a 14-year journey to an endometriosis diagnosis.

When I started menstruating at age 11, I knew something wasn’t right. I was bleeding heavily for weeks at a time and in excruciating pain every time I did so. My world felt like it was crashing down around me at the beginning of every period. My lower stomach would bloat to the point I looked several months pregnant. My gastrointestinal tract seemed to nearly stop working altogether.

For years, I would writhe on the floor in pain. At age 14, I had my first (diagnosed) ovarian cyst. It was about seven centimeters in diameter and only diagnosed after hours in the E.R., in a last-minute CT scan before I was supposed to be whisked into exploratory surgery. It was around this time that I started menstruating for 65 days at a time, with only a few days in between cycles.

No doctor could tell me why, nor did they really care. I became anemic and was just told to take iron supplements. No root cause was ever found. I was dismissed by gynecologists and pediatricians because they assumed I wasn’t tolerating my pain well and scolded for missing school due to my menstrual issues – after all, these were “just women’s issues,” and “constipation pain and cramps are not reasons to miss school.” Pill after pill, and even an IUD, couldn’t touch my problems, and only exacerbated my suffering. I wish I could say that my experience is unique. It most certainly is not, and that is unacceptable.

Not a single provider ever thought to ask why I was in such an inordinate amount of pain.

I tried to accept that I wouldn’t have an answer. Then I started seeing a gynecologist who is actually familiar with my other chronic conditions. She’s been the only health care provider who has cared to find the cause of my “womanly” issues. She also finally started the conversation about endometriosis.

And I went through all of this struggle as a cisgender white woman with health insurance. It shouldn’t be this difficult for any of us to get the care we need and deserve.

What Are the Real-World Implications of Being a Woman in the U.S. Health Care System?

The U.S. has the highest rate of maternal mortality among nations of equivalent wealth, and Black women are 3 times likelier to die of pregnancy-related causes than white women. The systems of sexism and racism upon which this nation (and the practice of medicine) is founded have direct effects on the quality of health care women receive to this day.

Do you ever wonder why diseases such as endometriosis, polycystic ovarian syndrome, Ehlers-Danlos syndrome, and fibromyalgia take years, or even decades, to diagnose? In part, it’s because these are considered primarily “women’s” diseases, whether that’s actually true or not. If we know that 1 in 10 women have endometriosis, then why isn’t it easier to find a provider who will listen? Why haven’t there been more studies done to identify a less invasive diagnostic tool? Despite the association of these conditions with women, 80% of studies on pain are conducted on either men or male mice. It is estimated that each year in the U.S. alone, there are 40,000-80,000 deaths caused by misdiagnosis.

I am a woman in pain. I’ve seen countless doctors, nurse practitioners, therapists, specialists, physicians assistants, and any other health care professional who might listen to me, to help crack the code of my pain. It wasn’t until I saw a female rheumatologist at the age of 22 that the word “hypermobility” even came up. I can’t count the number of times I’ve been brushed off as faking my pain, or exaggerating, or just anxious. If you’re a woman, or anyone presenting as other than a cisgender white man, medical professionals will have a tendency to paint you as “hysterical.”

While hysteria was removed as an official diagnosis from the DSM in 1980, the label’s violent and sexist history echoes in health care offices today.(After all, the word “hysteria” does come from the Greek word for uterus.) I’ve had providers dismiss my pain as depression, my chronic gastrointestinal issues as anxiety, and my nervous system problems as just “taking extra notice of what happens in [my] body.”

My gender is weaponized against me and used to dismiss me and deny me treatment.

How Can We Make a Change?

1. First and foremost: Believe women – believe everyone – when they tell you they’re in pain.

We each know our bodies better than anyone else. We know when something is wrong. For so long I convinced myself that everyone lived life in excruciating pain every day. I was 23 when I was finally given pain relief treatment options. Telling people where my pain was on a 1-10 scale did nothing for me. I needed people to trust me. To this day, even with several physical diagnoses in my chart, I am met with providers who don’t believe me when I tell them how much pain I’m in. I’ve been to emergency rooms where they’ve given me an antacid or acetaminophen and told me they couldn’t do anything else.

2. Education. Education. Education.

In January 2015, the MCAT finally included social and behavioral sciences sections. Medical professionals need continued sociological training and should be required to pass regular practical exams in the “soft” sciences and bedside manner along with their traditional board exams. What’s the point of practicing medicine if you’re not actually helping people? Medical education needs to include coursework and fieldwork that involve unlearning and undoing the conscious and unconscious biases and bigotry that have been built into medical institutions in the U.S. If we’re going to reconstruct the system, we need to start with the education of future generations of health care practitioners.

3. Address injustice when you see it (and when it’s safe to do so).

If you’re comfortable, share your story on public platforms. Write to medical schools and ask to give a presentation about your experiences in their classes. Call out prominent figures in the medical community and heads of hospitals and departments on Twitter. If you have the time, energy, and ability, offer to be a health advocate for friends and family who may be nervous about speaking up or taking notes during medical appointments.

While it’s especially important for those in power to change their ways and make health care more accessible to all, we can all do our best to empower women and other folks who are currently and have been historically disenfranchised by those in medical professions. Let’s counteract the idea of the “good patient” by speaking up for ourselves and others in and out of the exam room.

I wonder how long my conditions would have gone undiagnosed if I were a man. Maybe I wouldn’t have had to experience as much pain and suffering as I have.