Being Vocal about Endometriosis is Tough, but Necessary
I’ve been writing about endometriosis for almost three years now, ever since my diagnosis. I love this side of my job, and it makes me very happy to help others feel understood and heard. However, being an advocate of this disease means sharing a lot of my own life, talking about things that are very private, from my unruly insides to the mental health effects I’ve had to live with. It ain’t pretty, nor easy.
When meeting new people, it becomes an unavoidable topic of conversation. As soon as I’m asked what I write about, my own experience of the disease comes into play. That means talking about irregular bleeding, stained bed sheets, depression, and infertility. This is something I struggle with a lot.
With endometriosis, or any other chronic illness, there will always be those who view you in a somewhat "screwed up" way. Being vocal about the disease means being exposed to hearing things you may not want to. It also means that when you decide not to speak, or can’t do so because you’re not there when certain things are said, people will make up their minds in a way you cannot control.
Speaking up may make me uncomfortable, but I am learning that it is essential to change the conversation.
There are quite a few myths we still need to bust:
"Endometriosis patients are always sick"
I know this one is a tad special because, technically, we do have a chronic illness. Endometriosis currently has no cure, so it’s about living with it. Because my “bad days” are so disruptive, they have a huge impact on how others see my life. I have to cancel plans, or show up heavily drugged, resembling an insomniac skunk. I really don’t want to be seen as the sick one, but a lot people that know me, see me just like that. The truth is that on most days, I am able to exist just like everyone else, work, do yoga... even climb on trees!
"Endometriosis patients are weak"
To begin with, my pain threshold is incredibly high. I regularly put up with excruciating levels of discomfort, sometimes with no painkillers, and just breathe through them. Additionally I am currently training to run my first marathon. I am independent and perfectly capable of carrying my own shopping, or both my wiener dogs! Endometriosis patients are not weak, we are as tough as nails.
"Having endometriosis is a sad story"
I am definitively not a Grey’s Anatomy episode, or the season finale of This Is Us. Just like everyone else, I'm a regular human being, with good days and bad days. I have gone through multiple surgeries, and bravely sat through medical exams that are just too embarrassing to describe. I've even politely argued with more doctors I care to remember. I’m a seriously resilient person.
The truth is that as an endometriosis patient, I cannot prove everyone wrong, nor can I live my life consumed by what others may think of me. However, increasing awarenesses on this disease begins by challenging the misconceptions that surround it. Ultimately, that means talking about endometriosis, being vocal and honest about it all: ugly crying, heavy bleeding, and the rest of it.
Have you ever experienced a "weird" symptom and wondered if it was endo related?