When was the last time your doctor didn’t believe the pain hurt as much as you said it did?
Science and medical writer Abby Norman is no stranger to having her pain invalidated. During her first semester at Sarah Lawrence College, she experienced thunderclaps of pain that felt, she writes, as if she were “on the receiving end of an unseen assailant’s invisible knife.” These were the first of many aches and pains that doctors not only failed to understand, but for the most part, did not believe.
Endometriosis is a medical condition where uterine tissue grows outside of the uterus and causes severe, and oftentimes chronic, pain. The condition affects 5 to 10 percent of people with uteruses. As reported by Rewire, “other symptoms include cyclic pain, painful urination, painful bowel movements, pain with sex, excessive bleeding, or infertility.” The condition has also been connected to other “conditions such as asthma, chronic fatigue syndrome, fibromyalgia, thyroid issues, and (other) autoimmune disorders.”
Frustrated with her own delayed diagnosis of endometriosis and more, Norman—at that point, a fairly recently emancipated minor and college drop-out—embarked on a journey to better understand the history behind the cultural consequences of misdiagnosing and mistreating women patients. Her many drowsy afternoons in libraries and sleepless nights up thinking about misogyny inspired a longer work, Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain, which will be released by Nation Books on March 6.
Rewire talked with the author about how her personal history informed her writing and independent research.
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Rewire: Your book meshes together dense medical research with your lived experiences. How you were able to strike the balance between the two?
Abby Norman: Well, it was the only way to approach it. It’s not just because it’s my nature to investigate things and to put them in a bigger context, but also because I felt really strongly that my experience was just sort of one of many, many, many, many narratives that have to do not just with endometriosis, but this whole issue of women’s pain not taken seriously by the medical profession. A lot of the research that was in the final version of the book was stuff that I’d come across long before I ever set out to write about these experiences. My hope is that people who are struggling with this in some way will be able to read it and feel that they’ve gotten useful information, or even maybe some validation out of it, but I also wanted it to be useful to people who aren’t already aware of these issues who could really benefit from becoming aware.
Rewire: You wrote openly about your first sexual encounters, the first time you used an enema … even “hot fiery diarrhea” came up a few times. What do you hope readers will take from that vulnerability?
AN: It’s very fortunate that my agent, editor, publicist—everyone that is involved—has been championing this book, and that is really incredible. This team of really strong, powerful women has been very empowering. I tried to tone it down in the beginning. My natural impulse was to not make people uncomfortable. Then I thought, you know, “I tried to do that for awhile.” These are exactly the things that we do not talk about. I kind of had to just decide that ultimately, it’s probably going to be very uncomfortable for me once this book is out. I’m hoping people will say, “That’s exactly how I feel,” or, “This is something I’ve never told anybody, but now I’ve read it and I feel better.” I could live with the discomfort. If I wasn’t in a place where I felt like I could commit to that, then I just wouldn’t have written it.
Rewire: You did a lot of self-advocating for yourself, not just as a working-class woman, but as an emancipated minor. Do you have any words of wisdom for readers who are navigating reproductive health care from historically marginalized backgrounds?
AN: The experience of having to navigate a health-care system—in the way that I have throughout my life—has been the most profoundly difficult thing. It has been at times not just infuriating, but absolutely humiliating. The depth of my self-doubt is usually the result of those interactions.
I will be very honest with you. I’ve written this book, I advocate for these issues and believe in them, but I still am grappling with the anxiety that I feel now about scheduling a Pap smear; about going in and having just a routine exam. If you have enough of those experiences, it does traumatize you in a way. But being emancipated at 16 meant I always had to be responsible for myself at an age where that manifested in a very extreme way. It solidified my feeling of being responsible for myself in a very sort of major, big, kind of anxiety-provoking kind of way.
I hope that, if anything, this book puts into perspective that there are so many challenges and problems so much bigger and broader than just one person’s interaction with the health-care system. And you have every right to focus on successes, even if they’re very small, because the things that are not going well when you’re trying to do this work to advocate for yourself are most often beyond your control. It doesn’t make it fair or easier to deal with, but it’s the reality of the situation. I think a lot of people struggle because they take on a feeling of responsibility and they blame themselves. That’s really where I think that self-doubt comes in.
Rewire: My jaw dropped when I read how Dr. Melanie Marin explained people didn’t experience menopause until recent history because life expectancy nowadays is so much higher, and we don’t really know what “natural” periods are. In chapter six, you wrote about how a lot of women hold onto the belief that menstruation is natural. Why is that a dangerous trope?
AN: There’s so much about that conversation that, several years later, I still think about. The relationship to menstruation in general is one that I think has historically been far more fraught than we publicly talk about. We’re just at a point now where we’re only just opening up conversations about periods, so I don’t even know if we’re ready to start talking about what it would mean for anybody who menstruates to willfully reject that part of their identity. For so many people, being able to have those conversations finally—in a much broader way and hopefully, ideally, in a much more inclusive way—is going to be really, really important.
I’m still trying to navigating how we create the space to have those conversations for people who want to have them, but also have this other component of that conversation, which is the ability to allow somebody to suppress their menstrual cycle indefinitely if they are not trying to actively get pregnant and therefore don’t need to have a period for that specific purpose, and for people who have a number of conditions like endometriosis. My personal narrative in this book is very informed by this fact that I identify as female. That is by no means representative of the wealth of experiences that we need to consider. We could open up a conversation about how we think about periods, to say that we can outright decide not to have a period for a long time and that menstruation doesn’t necessarily have to be part of this broader, cultural definition of womanhood. It doesn’t even necessarily have to be like this rite of passage for young women. That is going to inherently create a space for people who do not identify as female to be part of the conversation in a way that doesn’t feel inherently exclusive.
Rewire: What would you like to see from now on in terms of reproductive and gender-inclusive medical research?
AN: We can’t frame these issues of being all in somebody’s head or the result of some physical manifestation of unresolved Freudian psychological turmoil. That doesn’t mean that we have to completely discount the fact that a major, influential, important, and valid component of these experiences is around mental health, and that support on that front is absolutely vital. I look at the long history that we were up against as vulnerable people. I look at the, you know, current socio-political climate and I do feel not necessarily hopeless, but just very cautiously optimistic that things could change. It’s not going to be something that happens overnight, just like we didn’t get here overnight.
I hope this book will become a tool for people who are trying to advocate, make a change, and do the work, but I’m also aware that you can’t have that piece of it without ultimately being dragged into the opposition as well, which is fierce and determined to drag people down who are fighting for these issues and to silence them. The only thing I really know for sure is that I’ve had this experience, but if I can even help one person feel empowered enough to share that with people and to live it and own it in a way, I’ll feel like I’ve done what I was set up to do.
This interview has been condensed and lightly edited for clarity.