Here is the full transcript of documentary filmmaker Shannon Cohn’s TEDx Talk: The Most Common Disease You’ve Never Heard Of at TEDxUniversityofMississippi conference.
Thanks, guys. Have a look around the room and count ten women, or think about ten women you know: your mother, your daughter, your sister, your friends. What if I told you that it’s almost certain that at least one of these women has a disease: a disease that no one knows the cause or the cure of. It’s a disease that takes an average of eight doctors, ten years to diagnose.
In the US alone, this disease puts a burden on society of an estimated $119 billion annually, in lost wages, lost productivity, and associated medical costs. It’s a disease that directly or indirectly affects you.
So what’s this disease? Endometriosis. Endo what? Exactly! The dictionary definition of endometriosis is when tissues similar to the uterine lining grows outside the uterus in other parts of the body. This can cause pain, organ dysfunction, and internal bleeding, and scarring. The reality of endometriosis is so much more than that.
It’s arguably the most common devastating disease on the planet that most people have never heard of. If you have heard of it, odds are you don’t really know. Let me tell you a story. Growing up, I was a happy, healthy kid. I made good grades, I was an athlete, I was raised primarily by my father, and I didn’t give him much trouble. However almost overnight, when I was a teenager, everything changed. At 16, I was suddenly sidelined each month by terrible pain, when I started my period.
Yes, I said period. No one freak out yet! This pain, it wasn’t like, ‘take an ibuprofen, lie down, you’ll rest, you’ll feel better’ type of pain. It was ‘knock you off your feet, lying on the cold bathroom floor, alternating between hot flashes and cold sweats type of pain.’ Of course, I went to my family doctor, who assured me in successive visits, that this pain was normal, it was part of being a woman. Maybe my pain tolerance wasn’t very high, or maybe I was just trying to get attention.
First, let me just say that I was well aware of the many ways that a 16 year old could get attention, and complaining about pain for my girl parts; it wasn’t one of them. So, what could I do? I managed as best as I could. I loaded up on painkillers for a few days each month, and I continued on. I scheduled exams and work around when I thought my symptoms would be worse. Imagine a full course load or a demanding full time job when some days, you’re actually in so much pain, and you can’t stand up straight.
Years past, and I developed more symptoms that I thought were unrelated: GI symptoms like nausea, bloating, fatigue, migraines. I saw 17 doctors, world-renowned specialists at the best hospitals, and they ordered a constant battery of tests, of course: blood work, MRIs, CAT scans, colonoscopies, endoscopies, you name the test, it’s likely I had it. And everything came back normal. Seriously, it was pretty ridiculous. Isn’t this the image that we have in our mind of what a doctor’s visit should be like: a kind, caring doctor who’s there for us, and we can depend on him-her completely? While this may be the case with things like the common cold, evidence suggests that when things are less clear-cut, and especially if they involve women’s health, it gets complicated quickly.
According to a recent study published in “The Journal of Law, Medicine and Ethics,” while men wait an average of 49 minutes in an ER to receive painkillers for abdominal pain, women wait an average of 65 minutes for the same thing. We’re talking about almost 20 minute average across the board. And, more often than not, women are offered sedatives first for the exact same symptoms. This isn’t new information from a woman with endometriosis; we are regularly told that we’re overreacting, or hypochondriacs, drug seekers, or the dreaded “hysterical.” Let’s talk about this idea for a moment: the “hysterical female.”
Hysteria was the first mental disorder attributed to women and only women. In 1900 BC, ancient Egyptians attributed hysteria to a “wandering womb.” Yes. Those silly wombs always running around causing problems Since then, this idea of “female hysteria” has persisted, and it’s not hard to see how gender bias may play a role in medicine.
From an early age we’re taught certain social codes: be polite, ask nicely, wait your turn. We’re taught to suppress our anger and apologize for our tears. So, it’s not hard to see how we may fail to push back sometimes against a doctor who’s dismissing us. In fact, according to a study by the Yale School of Public Health, young women sometimes delay potentially life-saving treatments for heart attacks because they’re worried about being told they’re overreacting. I myself have been in an ER doubled over in pain, yet, still tempered my language, emotions in case I seemed melodramatic.