[image quote: "I was in a situation where I couldn’t ask my mom, I didn’t have older women in my life that i could ask, my friends weren’t really into to talking about it…the reason I’m so vocal about it now…is that I’m trying to overcompensate for all the years of being ignorant to my own experience." - Abby, episode 29; Endometriosis patient]

[image quote: "I was in a situation where I couldn’t ask my mom, I didn’t have older women in my life that i could ask, my friends weren’t really into to talking about it…the reason I’m so vocal about it now…is that I’m trying to overcompensate for all the years of being ignorant to my own experience." - Abby, episode 29; Endometriosis patient]

29 Digital Red Tent (episode page)
Description: Friend of the podcast Abby Norman (from episode 16) and I got together to debrief about the Endometriosis Foundation of America conference we attended. We actually didn't wind up talking about it much (sorry! ¯\_(ツ)_/¯), but we covered some of it, what patients really need until there's more consensus on how to treat the condition, medical debt, menstrual stigma, bleeding on things, personal care, and living with chronic fatigue.

[intro]
Hey there and welcome to In Sickness + In Health, a podcast about chronic illness, disability, medical traumas, and everyday uncomfortable healthcare experiences. My name is Cara Gael; I’m not a doctor or medical professional, I’m just a person and a patient who really wants to talk about this stuff more.

Nothing said on this show should be considered medical advice. If you’re experiencing a medical issue, please seek qualified medical help. I know the system sucks, but I wish you a lot of luck. Every person is different, even within disease groups, so none of my guests should be regarded as official representatives or spokespersons for their conditions. Please respect their very personal choices, and unless they ask for it, please don’t make suggestions about treatments or lifestyle changes. Unsolicited medical advice is never not annoying.

In today’s episode friend of the podcast Abby Norman (from episode 16) and I got together to debrief about the Endometriosis Foundation of America conference we attended. We actually didn't wind up talking about it much (sorry! ¯\_(ツ)_/¯), but we covered some of it, what patients really need until there's more consensus on how to treat the condition, medical debt, menstrual stigma, bleeding on things, personal care, and living with chronic fatigue.

You can hear Abby talk about her own personal experience with Endometriosis in episode 16. We talked about how difficult it can be to get it diagnosed, having others value her fertility and the satisfaction of her male sexual partners above her own health and quality of life, and the book deal she recently signed to write about it. Since we recorded that episode, Abby has launched a Medium publication called Ask Me About My Uterus that includes essays, interviews and research about women’s health, menstruation, endometriosis, PCOS, PMDD, menopause, miscarriage, identity, infertility and more.

Like all menstrual health issues, endometriosis does not only affect women, but can affect anyone with a uterus, or who used to have a uterus and maybe doesn’t anymore, whether they identify as a woman or not. We’re in the habit of talking about it as a “women’s health issue,” because it is an estrogen dependent disease that involves the uterus, but as we’ve talked about before on the show, this is something that does not only affect women. I apologize for not having used more inclusive language in this conversation, it is a habit I am still working on changing.

We talk about certain grooming habits in this episode—things like shaving our legs or wearing makeup—but we didn’t get in to how those things are perceived by the world around us, which can be tricky business for the chronically ill, especially for those with invisible illnesses. We already battle against so much disbelief and distrust when living with invisible illness, and our choices to wear makeup or not is often policed by others who believe if we’re wearing makeup, we can’t really be so sick. This is of course garbage talk, and it’s complicated, and like I said, we didn’t get into that aspect of it. I just wanted to point out that those decisions are personal, and looking good does not always equal feeling good. But if you’re listening to this podcast, you probably already know that.

As always, I’ve included links to learn more about some of the stuff we talk about in this episode in the show notes. Find resources and more from us at insicknesspod.com and on social media @insicknesspod.

And I hope you enjoy this episode.

[interview]

[outro]
Thanks for listening to In Sickness + In Health. Find resources and more from us at insicknesspod.com and on social media @insicknesspod. Check out Ask Me About My Uterus on Medium, and if you haven’t, take a listen to Abby’s first episode of the podcast, episode 16.

And don’t forget to be excellent to yourselves and each other.