words by cassandra earle
I was twelve when I learned the word “endometriosis.” I could hardly pronounce it, let alone understand the pain that comes with such a heavy, suffocating diagnosis.
Endometriosis is described as when “the tissue similar to the lining inside the uterus (called the endometrium), is found outside the uterus, where it induces a chronic inflammatory reaction that may result in scar tissue,” according to the World Endometriosis Society.
My mom was diagnosed in her early twenties after struggling her whole life with a type of pain most doctors couldn’t comprehend. The disease is hereditary and can be passed through families, so it was a discussion my mom and I had on a number of occasions.
Surgery remains the only way to diagnose endometriosis. At seventeen, I had surgery to diagnose me, following years of doctors’ offices, medications, physical therapy, counselling, and pain clinics. It was hard enough navigating the world as an angsty teenager, but this diagnosis made me feel different. I felt like something was wrong with me. I hated my body — but not in the same way other girls seemed to, where they picked apart their appearances. I hated my body for the pain it inflicted upon me, for the alterations I had to make in my life to simply exist and for the parts of living that I missed out on. The hatred went much deeper than wishing I had smaller thighs or a flat stomach (although those insecurities also existed).
It was hard enough going through the world as an angsty teenager, but this diagnosis made me feel different. I felt like something was wrong with me.
I started working out heavily in an effort to distance myself from the pain I felt inside. In some warped, subconscious way, I thought if I looked good nobody would know how much I was struggling and how much torment my body was going through. I avoided mirrors. I almost never left the house without makeup on.
I tried to place my worth in the parts of my life that were separate from my body and my illness whenever I could. Aspects of my life such as my friendships, my family relationships, my career and my schooling became far more valuable to me. In some ways, they took the brunt of my search for self-worth.
In December 2020, I started a reproductive advocacy account on Instagram at the advice of my friends after a rather disappointing appointment with my specialist. I had quietly observed the endometriosis community on social media but never participated. I had barely told anyone in my life that I had this diagnosis, so the idea of sharing my story for the world to read was daunting. But it also felt right.
I tried to place my worth in the parts of my life that were separate from my body and my illness whenever I could.
Since then, I’ve connected with people who have endometriosis from around the world. I’ve received messages from people I knew in high school asking for advice with their pain. I’ve been sent messages by strangers detailing how the account has helped them come to terms with their own pain. I was asked to speak on a panel about endometriosis a few weeks ago. These are all things I never would’ve experienced had I not found the courage to be louder than the pain I feel.
Between the account, my steady support system, therapy, and a lot (like, a lot) of growth and work, I’m learning to mend this relationship with my body. Some days are harder than others. I’m trying to grasp the idea that my body isn’t betraying me, and instead, it’s fighting as hard as it can every day, in the only ways it knows how.
Between the account, my steady support system, therapy, and a lot (like, a lot) of growth and work, I’m learning to mend this relationship with my body.
I won’t lie and say that my hatred for my body and what it’s done to me has completely disappeared. But it’s a much smaller, quieter voice. I’m growing to appreciate how hard my body fights for me instead of being angry with how weak I feel. I’m working to have patience with my limitations.
There’s a long way to go, but I’m learning to love all the pieces of myself — even the parts that hurt.