For Endo Awareness Month, March 2022
Hey it’s me again. Here to say something about this Endo disease again. If you’re tired of it showing up on your screen, I invite you to enjoy the non-permanent aspect of your annoyance.
Unless you are personally impacted by Endo, and then you know that these words are chronic and you can count on Endo to push an anvil over a cliff and bash your head most days. Usually in the late-afternoon hours, when all the optimism of the morning is spent and fatigue sets in.
Today is a beautiful Spring day, the kind of weather we’ve all been waiting for, and yet I feel splayed like roadkill on pavement. There’s a sun overhead that wants to roast me. But I can’t move. Every rise and fall of my chest is a push-up. Breathing is noticeable because it is the only thing I can do. My body says Rest, and Rest Now, Bitch. The breath demands it.
Physically, emotionally, I’m tired. And there’s still so much ahead. When I think of the past couple of years, I’m tired by how much I had to do to get the care I needed. And I’m tired knowing that the work to get continued care is never done.
In 2020, a lot of diffused Endometriosis tissue was removed from my body, from my chest to my abdomen, but I still suffer from this daily fatigue. Which is more than an annoying reminder of a shitty disease, it is time taken from projects, relationships, experiences — goals — things I wanted to do but am too tired to. I wanted to care a lot more about this post, and what I’d do to bring light to a chronic illness shared by 1 in 10 women.
But writing this from my bed at 4pm on a Saturday will have to be good enough.
Until we have the research that leads to efficient diagnosis, treatment and recovery, people like me will shine less, the world will have less of our light. Because Endometriosis is a disease that diminishes the quality of life lived and life shared. It literally has stopped me from procreating, and never able to become pregnant, I grieve for the child I will not be raising and sharing with you either.
I’ve noticed a particular apathy and passive response to this, and I understand the world is burning. It’s also not a secret that conditions that fall under the Women’s Health category are underfunded, they’re not prioritized. Organizations like “Endo What?” fight for Endo visibility so that this awareness will move the government and medical community to action. We need to keep funding research, training and educating.
Endo patients routinely end up in the ER for no good reason. This can be changed.
My first lung surgery never should have been executed by a team of people who ignored the significance of a “spontaneous lung collapse” recurring alongside my painful period. This awful, traumatic surgery was for nothing. Less than one year later I was having the same lung surgery a second time, but this time executed by diaphragmatic Endometriosis specialists. The first thoracic surgeon was treating me as a non-Endo patient, and it did more harm than good.
Endometriosis must be treated by specialists. But first, it must be diagnosed, so a patient has a chance to be given the right specialized treatment.
I regret not taking more time to research my recurring spontaneous collapsed lung before allowing a thoracic surgeon do an emergency VATS over Christmas 2019. I trusted the medical experts around me too easily and was grateful because I thought they were saving my life.
I also regret that I didn’t act on my knowledge that Endo is genetic and runs in my family. I listened to people who told me to wait to have kids. I believed the research on Endo had already been done and I wouldn’t have to learn the hard way.
In time I trust that I will value these hard lessons and maybe my anger and sadness will ease. I do love the life I have lived, disappointments and all.
But let’s not pretend we live in a world that values Women’s Health. We do not. Not yet.
Jacket Design by Huckmade
