Chapter 52: Endometriosis Awareness Month

March is Endometriosis Awareness Month, so it's possible that you've seen more articles being posted about it, some people might have yellow ribbons on their social media profiles and fundraising asks from non-profits have increased. I talk about endo a lot, so besides my Facebook cover photo, not much has changed. It is still such a weird concept to me to have a condition that has a month. I always grew up with the idea that the really "serious" things that can kill you, like cancer, get months. I don't have anything that will kill me, so surely I don't "get" a month. Endo won't kill you, but the pain often made me feel like I was dying. And the fact that this pain was dismissed by so many doctors is something I am still struggling to come to terms with.

As I've mentioned before, the physical pain from endometriosis is hard to put into words. It feels like the Hulk has your whole pelvic region in his hands and he is similtaneously squeezing it, twisting it and stretching it, all while wearing gloves with spikes on them that are poking holes in your insides. And your breasts are tender, your back hurts, you have a headache and are nauseous. Oh, plus your flow is super heavy and filled with clots. And you're having digestive issues. And fatigue, but you're in too much pain to sleep. It's honestly a nightmare. Over the counter pain meds don't touch the pain. Doctors are hestitant to give you anything stronger because of the opiod addiction crisis, and you just feel stuck. I could probably make a few student loan payments if I had a dollar for every time someone told me that periods are supposed to hurt.

It is so hard to describe this pain to someone who has never felt it. That's why I love this exhibit by Korean-Australian artist Eugenie Lee. Lee has both endometriosis and adenomyosis, a painful condition that affects the inside of the uterus, and noticed that the pain of the chronically ill was often ignored or silenced. She created an interdisciplinary art exhibit to bring endometriosis pain to people. After learning about the neuroscience behind pain, Lee used a haptic belt, which is usually used for therapeutic purposes, to stimulate intense pelvic pain in people. She then asked them to play a video game while experiencing this pain. Most participants only lasted 2-3 minutes.

But people with endo don't have the luxury of turning off our pain after 2-3 minutes. And we don't have the ability to hook our loved ones, doctors, nurses and bosses to these machines so that our pain is understood. If you're a friend that I've ever hung out with more than once, I can promise that at least once we have hung out during a moderate endometriosis flare. If you have ever worked with me or gone to school with me, I have shown up while feeling like death. And I'm not saying this for some pat on the back or recogntion. It shouldn't have to be this way. Our pain needs to be believed so that we don't feel the need to try to hide it. School and work attendance policies are ableist and work and class that can be done from home should be allowed to be done that way. If the last year has taught us anything, it's that these accomdentations can be made when they need to be, so why aren't they done more frequently for people with chronic pain? And more importantly, why do we need to showcase our most painful moments constantly for our pain to be accepted?

When most people think of people in severe pain, they think of the physical manifestation of this pain- crying, screaming, fainting, vomited, etc. Have I thrown up and passed out because of endometriosis pain before? Yes. Do I want people to see that? No. Should that be a requirement for people to take my pain seriously? No. If my pain is bad enough for me to mention it, it's way worse than what those without chronic pain conditions would consider normal. And I shouldn't have to throw up in the lobby of my law school because I'm bleeding and cramping for my professor to realize that I need to go home and to relax the attendance policy. I shouldn't have had to hide pads in the lining of my boots during the bar exam because I needed so many for an 8 hour exam that they didn't fit in the baggie we were allowed to bring in. And as an adult, I should never have to fucking ask for permisison to use the bathroom. And neither should kids for that matter. Girls can start their periods as early as 8 years old. Endo symptoms can start right away. Do we really want little girls bleeding through pads because their teachers won't let them go to the bathroom? No. We have to do better for all people with chronic illnesses. But how?

This brings me back to Eugenie Lee's interdiscinplinary art program. In an ideal world, everyone would get sensitivity training on what chronic pain feels like, along with HR training in sexual harassment and other inappropriate ways to act (ie. how to not be a racist, sexist, homophobic jerk). However, that's not practical so let's start with medical staff. Let's hook all the doctors, nurses, PAs and students in these fields up one of these. My theory is that if they truly knew what the pain was like, there would be more of an urgency to try to help their patients. And maybe then move on to whoever makes attendance policies in work and schools. Ableism doesn't only affect people with endo- if affects all chronically ill people.

So what are you going to do to help advocate for the chronically ill community?