When Medicine Fails Women: Interview with Abby Norman, Author of "Ask Me About My Uterus"
Ask Me About My Uterus

When Medicine Fails Women: An Interview with Abby Norman, Author of “Ask Me About My Uterus”

According to Abby Norman, everything changed when she took the worst shower of her life. She was a sophomore at Sarah Lawrence College when an excruciating and inexplicable pain took hold of her lower belly and pelvis. She got out of the shower, threw up, and looked in the mirror, where she describes recoiling “at the haunting image of my mother staring back at me.” The fateful shower wasn’t just the beginning of Abby’s battle with pain and reckoning of her familial history, but also of her exploration into medical systems that have long failed women, and continuously minimized their pain.

When I spoke with Abby, I’d only finished about half of her book, Ask Me About My Uterus, and already, I didn’t know where to begin with my questions. The book is part historical study and part memoir—chronicling both her experiences with endometriosis as well as her personal backstory and its impact on the help she received.

Most striking to me in reading (I did subsequently finish it) Ask Me About My Uterus is Abby’s absolute independence and willpower. Emancipated from her parents at age 16 and forced to leave Sarah Lawrence due to health complications, Abby navigated much of her endo journey alone. She might argue otherwise in that throughout the book she enumerates the many ways friends and mentors helped her along the way, but as an outsider, it’s clear that it’s Abby’s own determination, curiosity, and absolute refusal to be a victim that led her not only to answer questions and navigate processes regarding her own health, but also to become a voice and a resource for other women who have been in pain and silenced for far too long.

In Abby’s words…

My diagnosis wasn’t necessarily delayed in the sense that it wasn’t there. I got a diagnosis sooner than a lot of people do, but in terms of trying to access resources or specialists, there were huge barriers for me socioeconomically. You have to understand it from a social justice perspective, because a lot of the long-term damage ultimately done to my body was because it took me so long to figure out what was going on. It doesn’t have to get this bad for everybody. That’s why I want to have this conversation.

Over the course of this journey, I’ve found I like structure, and evidence. [When trying to find ways to manage pain] I wanted something that would work all the time: When [pain] comes up, I know I can deal with it, here’s what I’m going to do—here’s my plan. That’s not the nature of chronic illness. It’s important to have multiple strategies. Use heat or wearables that try and disrupt the pain signals. Does physical activity make the pain better or worse? What about my diet? You have to experiment, and there’s some empowerment there but it was a lot of work.

We like to talk about empowering women to take control of their health, and I think that’s really valid but it’s also important to acknowledge that it’s hard and you need support. That’s why I felt really strongly about writing a book—something that’s tangible and is a tool. It’s my way of being supportive in this fight we’re all fighting.

I have so many physical limitations and I can’t do all the things I want to do because my energy is devoted to surviving my own life and fulfilling my own day to day requirements. That certainly makes me empathetic to the stories I hear, and I’ve been inundated with stories. The number of them isn’t frustrating—I know this was a much larger problem—what’s alarming is that the stories are the same.

It doesn’t matter where the women are from, how much money they have, it’s really the same thing over and over again.

That was the most distressing to me. Particularly in the context of #metoo—this conversation [about health and experience getting treatment] has become a facet of that. A lot of women are coming forward and talking about missed diagnoses, but also what they went through in terms of having to shed the belief system that normalizes female pain. I always point out [when telling my story] that I didn’t go to ER that first day.

It doesn’t matter where the women are from, how much money they have, it’s really the same thing over and over again.

I have to be somewhat culpable that things got worse because there were so many points at which I couldn’t afford or access care or didn’t have resources, but there were also periods where I felt I’d been so gaslit about my own experience and my own body that I didn’t feel comfortable trying to assert my experience because I became so uncertain.

I’ve got photographic evidence and medical records up to my neck, and sometimes I still wake up and I’m like, what if I don’t have any of this stuff?

I also suspected, based on my anecdotal conversations, that whenever you’re dealing—particularly in this country—with the healthcare system, privilege makes a huge difference. I certainly had difficult socioeconomic barriers because I was emancipated as a teenager and was often uninsured, but in terms of the layers of privilege, I also knew because I was white, that was going to make a difference in terms of different care and treatment.

I’ve got photographic evidence and medical records up to my neck, and sometimes I still wake up and I’m like, what if I don’t have any of this stuff?

Endometriosis was long associated as a white, career woman’s disease. We get that message continuously, even when we look at people who are advocating at a higher level, like Julianne Hough or Lena Dunham. There’s a lot of whiteness there, but it’s not a white woman’s disease. Women who are white are usually going to have a much easier time not just accessing healthcare at a basic level but also in terms of accessing specialists. When they’re accessing specialists, in this case it’s most often because they can’t get pregnant so they’re seeing a fertility specialist or a gynecologist at a teaching hospital, so they’re seeing someone more familiar with endo, who might be able to recognize it more so than someone at a clinic. There’s a huge gap there and the research is always going to reflect the population in terms of correlation vs. causation. If we can push to broaden the research, I think we’ll be able to change that.

I think one of the primary and foremost things that needs to happen is more compassion and inclusivity for the trans community in medicine in general.

[Another population that suffers in the margins is] trans individuals. Accessing healthcare for the transgender community can be so traumatic. It’s an area that really needs its own space and attention. In the very limited ways I was able to address it in the book, I hope to make space for the conversation to happen in a much larger context. I was able to speak with someone who was transitioning and trying to get a diagnosis for endo and one of the biggest barriers in accessing care in general was that there was so much trauma involved with the medical profession. This person told me they’d get a call from the nurse in the office and they’d address them by their birth name, which wasn’t the gender with which they now identified. The nurse thought they were this person’s husband. So even before the nitty gritty of the diagnosis and treatment a disease for which there are very few treatments for one hormonal situation, let alone a transitional one, it was really agonizing.

I think one of the primary and foremost things that needs to happen is more compassion and inclusivity for the trans community in medicine in general.

When people interact with the healthcare system, they get discharge paperwork, and most people can’t comprehend that at a level that’s useful for them, or actionable.

So, access is the first issue. And it’s overwhelming to think about. But it put into perspective for me knowing how difficult the experience has been for me, with my privilege, and how totally insurmountable it would be for other people. You look at celebrities with resources that are financially far greater than most people’s; they have access to the best doctors, the foremost experts, and they’re still struggling.

I never got a degree but through my own intellectual ability, I was able to solve and do and get the resources I needed. When I got into healthcare, I got really into health literacy. The majority of people in the U.S. don’t read at a very high level to begin with. When it comes to health literacy or numeracy, that’s even lower. When people interact with the healthcare system, they get discharge paperwork, and most people can’t comprehend that at a level that’s useful for them, or actionable.

For me, that’s when I realized I could do something with my own experiences and I was approached about writing a book. At first I was like, why does anyone care what I think? But I do have a skill in explaining to people at a level that’s useful, and it felt like a duty to me. When i was 15 and wearing bicycle shorts under my jeans so I didn’t bleed through, I was looking for this book in the library.

I come from a line of women who medicine failed. It failed my grandmother, who had a very serious, undiagnosed mental illness; then her daughter, my mother, who was mistreated or totally ignored by the healthcare system and that influenced me and defined my life. I have so much compassion for her now, imagining her trying to take care of a child when she didn’t have the support of her own body or the medical profession, and didn’t have the resources socioeconomically.

I come from a line of women who medicine failed.

All I can say now is you have to persist and keep going. It feels empty, but you do. Before you set out to try and be your own advocate, before you go into a doctor’s office armed with your research or you fight to get a referral to a different doctor, you have to go into it understanding that so many reasons why it’s difficult are bigger than you.

There’s a lot of fault beyond any one person, and there’s something liberating about that. I hope that knowledge gives people the freedom to persist through those difficulties and to understand that it’s absolutely not your fault. I wish I had not just heard that sooner, I wish I had believed it sooner. That would’ve made an enormous difference.

As told to Megan Lierley by Abby Norman. This interview has been edited and condensed. Featured photo by Meg Fee.

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