The other day I was having a pretty good conversation with someone (an acquaintance, so not someone who’s intimately familiar with my intimates), about my endometriosis and recent surgery. I say “pretty good” because she seemed to get it, was trying to relate from her own life experience, and was sympathetic and kind. She shared some stories about a friend of hers who also has endo, and how it has been hard for her to see her friend struggle with the disease and resulting infertility. It felt good to share.
Then she said “I don’t know why doctors aren’t better about this. I guess women just have to speak up more."
And then my head exploded.
I have spent my life speaking up about my pain and my disease, and I have spent my life being dismissed and belittled by medical professionals. It started when I was eleven years old and my mother brought me to a gynecologist because my periods were so heavy and painful and frequent that I was missing school and wearing mattresses for maxi pads. We were both terrified. They tried to put me on the pill (which I refused because I was *eleven* and completely creeped out), and that was it. Conversation over.
Symptoms crept in and out of my life consistently for over two decades. I never once had a doctor say "I think you have endometriosis. This can be serious. I can see it’s affecting your life in a significant way. You should see a specialist.” Eventually I was diagnosed by a friend on Twitter (yes, you read that correctly), and finally got the nerve up to call a specialist on my own. Her diagnosis changed my life. Why? Because twenty-plus consistent years of having my symptoms ignored - including infertility that required medical intervention and IVF - left me literally feeling like I was crazy. Maybe my pain isn’t real? Maybe my infertility isn’t real? Maybe I just need to relax? What the hell is going on?
Just before I finally met with the endometriosis surgeon for the first time, I was telling my therapist about how nervous I was. Actually, I was sobbing because I was terrified that the surgeon wouldn’t believe me, and then I’d have no one who could help me. My therapist said “Why wouldn’t she believe you? This is her job, to help you.” Oh. Lady, you so don’t get it. You do not get this. And, apparently, you’ve not seen other patients who’ve been through this type of… I don’t even know what to call it… neglect? Neglect. Who have been through this type of medical neglect. I mean, even my therapist didn’t recognize what was happening. Talk about feeling helpless…
I guess my point is that this is real. Our diseases our real. The ways in which our medical care has been mishandled is real. The neglect is real. And, it’s not our fucking fault. (Sorry, I’m pissed now.) Yes, we need to continue to speak up. But, I think we also need to start insisting. And, people - doctors - need to start listening.