Why Sharing Our Stories Is Important
Last updated: February 2022
When I received my endometriosis diagnosis, it was kind of by accident. I had gone for a laparoscopy following a miscarriage and my OB-GYN found my insides riddled with endometriosis. He told me this after I had come out of recovery and I was then sent on my way with a prescription of the pill and the advice to “get pregnant as soon as possible”. Quite insensitive considering I’d just had a miscarriage.
After my diagnosis, I needed answers
What I didn’t receive was information on what endometriosis was, what symptoms were associated with it, and how it could be best treated. I didn’t know anyone who had endometriosis, it was a completely new concept for me. I’d never been told I could have it, even though I suffered horrendous periods since I first stated menstruating. It wasn’t until years later that I found an online group of other endometriosis sufferers.
What I learned from reading stories of other endometriosis sufferers has been invaluable. For the first time in years, I didn’t feel so alone. Sharing my own story made me feel validated as well. It’s hard to suffer from endometriosis alone, not in the least because people who don’t suffer from a chronic illness have no idea how we feel. “Healthy” people often minimize our experience, or, worse, tell us to just get on with things. Talking to others about our experience with endometriosis helps us feel less like we’re just imagining things.
Learning about surprising endo symptoms
I also found that reading other people’s experiences helped me understand endometriosis better. Doctors only seem to focus on the most obvious symptoms of endometriosis: heavy, painful periods, and potential infertility. Reading other people’s endometriosis stories helped me understand that so many illnesses or discomforts I’d been experiencing were, in fact, symptoms of endometriosis. I found it very helpful to read what others had been struggling with as it confirmed for me that I wasn’t just an unhealthy person, but that endometriosis had a larger impact on my health than the doctors would led me to believe.
Reading other people’s stories has also helped me find more resources, and has helped educate me on different treatments I could try. Doctors can give you academic information on treatments, but it helps to hear from other endometriosis sufferers what helps for them, and what the potential side effects are of certain treatments.
We can improve endo awareness
Sharing our endometriosis stories isn’t just beneficial for us. Endometriosis is still not a very well-known condition, even though 10% of women suffer from it. The more we share our stories, the more we help spread awareness of endometriosis. And awareness is necessary for the medical community to research the causes and possible cures of the disease. Letting people know how debilitating and devastating endometriosis can be - beyond just a heavy, painful period - can also help us get better help from employees, schools, and our own family.
And last, but not least, telling people about endometriosis can also be a good way to get our frustrations off our chest. Endometriosis is a hard condition to live with, so speaking up about it can lift the burden a little bit.
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