A Kairotic Moment for Women’s Pain and Illness: A Review of Three Books

Review essay by Caitlin Ray

Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery (HarperOne, 2018)

Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine by Michele Lent Hirsch (Beacon, 2018)

Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain by Abby Norman (Nation Books, 2018).

I was diagnosed with a rare muscle disease, dermatomyositis, in 2010. I was 23. I am 31 now. In the intervening years, I have been told my disease is nothing but a nuisance (from an eye doctor who—perhaps—should focus on my eyes), that my pain is psychological and is best treated with antidepressants, that I am too young to be chronically ill, and, in part because of my age and gender, too emotional to talk about the my diagnosis and treatments.

I say this not only because it positions myself, and how I read the three texts I am reviewing, but because disclosing illness is also what each author does at the outset of their own work. Here, I am reviewing Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery (HarperOne, 2018), Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine by Michele Lent Hirsch (Beacon, 2018), and Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain by Abby Norman (Nation Books, 2018). All three of these books, published between February and March of 2018, examine the legacy of women’s illness and pain, and historicize current healthcare issues, all while weaving in the authors’ own experiences of illness and the first-hand accounts of other sick women. In reviewing these texts in conversation — even disagreement — with one another, I hope to offer a fuller picture of what it means to be a woman in the current healthcare system.

Knowledge, Trust, and Doing Harm

30653955Doing Harm by Maya Dusenbery, a journalist and editor of the website feministing.com, examines the ways that medicine has historically disenfranchised women and still discounts our experiences of illness and pain. Of the three texts, Doing Harm is by far the most traditionally non-fiction. While Dusenbery does disclose that she has been diagnosed with Rheumatoid Arthritis, this book keeps her experience in the background, which separates it from the other two texts that focus more intently on the author’s own experiences with illness and pain. While less deeply intimate than the other two books, Doing Harm is an effective introductory text to the ways that the medical system is biased against women.

Dusenbery offers a thorough picture of medicine’s historical (and current) resistance to women’s pain, illness, and experience. One way Dusenbery does this is by framing the problem through the “knowledge gap” and the “trust gap” (11). The knowledge gap, she writes, are the ways that we simply don’t know about women’s medical concerns. Women have historically been excluded from clinical trials and medical research due to hormonal fluctuations and potential pregnancy. As a result, much of what we know about medication dosages, chronic diseases, and symptoms of medical emergencies are based on studies done by men and simply applied to women in an “add women and stir” approach (33). While medical research is attempting to correct decades of a lack of research on women through legislation, like the 1993 NIH Revitalization Act, there is still a lack of progress and research on women’s health.  

Complicating the knowledge gap is the “trust gap” between women and medical professionals. The trust gap is doctor’s not believing in women that they are either telling the truth about their symptoms, or that their symptoms are physical in nature (as opposed to psychological). The trust gap is also the legacy of hysteria, and the double-bind that women find themselves in: that they are either too emotional to be trusted to report on their pain and illness, or (if women try to resist this stereotype) that they are not emotional enough to be as sick as they report. The trust gap manifests in several ways: diagnosing women as having psychosomatic or conversion disorders, prescribing anti-depressants or sedatives for pain management, or simply doubting a women’s account of illness until objective physical evidence appears (if it does).

Doing Harm speaks to the historical and current landscape of medicine  and the systemic ways that women are kept sick and in pain. It provides a thorough overview of the issue, but in its desire to cover a lot of territory, it is simply not as in-depth on specific issues. For instance, Part 2, “Invisible Women in a ‘Male Model’ System” discusses the under-researched issue of women and heart disease, bias against women in emergency rooms, the lack of research for autoimmune diseases, and the ways that women are often pushed into psychiatry and thus experience a delay in diagnoses, in the space of 34 pages. Invisible and Ask Me About My Uterus are much more thorough, but less of an introductory text than Doing Harm.

“Deathyness” and Invisible

33931697Invisible by Michele Lent Hirsch also discusses women who experience illness and pain, and touches on many of the same subjects as Doing Harm. Michelle Hirsch, a journalist specializing in science, gender, and health, brings her own experiences into this text much more than Dusenbery does in hers. Hirsch also focuses more on the implications of chronic illness and pain in young women. The result is a thoughtful and deeply grounded text that uses the author’s own experience as a springboard to discuss phenomena that she noticed herself about being a young woman with chronic illness. The very things that make the text effective for me (also a young woman with illness) may be less effective for other readers—those who aren’t in this demographic, or those wanting a more rigorously researched text that doesn’t depend so heavily on anecdotes may prefer a text like Doing Harm.

Hirsch divides the book into sections on dating and sex, beginning a career, having kids, maintaining friendships, and generally the experience of being in a (young woman’s) body that is ill.  Hirsch captures much of the stigma and difficulty of being a sick young woman through both her own experiences having cancer and a rare disease and through interviews of other young women with chronic illness. This closeness with her subject allows Hirsch to dig in deeply with her topics, and often will frame a chapter with her own experiences and then talk to other women to get a more complete picture.

One key theme throughout the book is captured in Hirsch’s use of the term deathyness: “the state of having a palpable connection to [death]—the reminder that you can be young and yet seem, to some people, decrepit.” She further describes this phenomenon as when she “walked around feeble, hollow version of myself… I suddenly felt twice as old” (34). “Deathyness” pervades much of the challenges Hirsch writes about. For example, when she experiences discrimination in the workplace (where she was told to check her cancer “at the door”), she uses that as a jumping off point to discuss ways that women face discrimination in their careers and how wanting to fit in with other young professionals but physically (or mentally) being unable to causes frustration. Hirsch also brings her insights into a discussion of friendship and pressure for young women to fit in despite illness and pain. She highlights here much of the particular challenges facing young women who are “off-time,” that is, the stress and isolation that occurs when someone experiences culturally expected events, like sex, childbirth, marriage, careers in a different time in the life cycle than peers (93).

While Doing Harm talks about the systemic issues of women and illness, and Ask Me About My Uterus is more of a memoir with research woven throughout, Invisible blends research and experiences so that each section is both connected to the author’s own experience of being a young woman with illness and to interviews the author has done to gather data on the issues Hirsch is exploring. As a result, the book offers excellent insight but resists a self-help tone that other books that explore young women navigating life with illness might utilize.  

Home, Hope, and Uteruses

35605474Ask Me About My Uterus by Abby Norman is less about the systemic problems surrounding women and health and is instead a memoir about the author’s experiences with endometriosis and a neurological condition. Norman, a science writer and patient advocate who started a blogging space called Ask Me About My Uterus [link: https://medium.com/ask-me-about-my-uterus] on Medium, is writing about not only illness, but about childhood trauma, abuse, and her desire to find a place she can call home. For those wanting a deeply felt, experiential text about women’s illness and pain, particularly about endometriosis, this is an ideal text. For those that want a broader view, or a more deeply researched text, Doing Harm or Invisible might better fit the bill.

Norman goes between past and present, considering how her tumultuous childhood masked and made more difficult the health traumas she went through in her late teens and early twenties. Her story begins during a semester at Sarah Lawrence, when she experienced “a stabbing pain in my middle, as though I were on the receiving end of an unseen assailant’s invisible knife” (2). This set off a chain of events that would introduce Norman to the frustrating world of ERs, the pain scale, doctors who don’t know what to do, doctors that are sure that her pain is psychological, and doctors that completely discount her experiences. In trying to understand her pain, and the pain of others in similar situations, Norman sets out to research all she can about her illness, the health system she is ensnared in, and the historical and cultural meaning of pain like hers.

Where Doing Harm provides a Boeing Jet’s view of the terrain of women’s health, and Invisible is perhaps a helicopter landing and taking off in that same wilderness, Ask Me About My Uterus is what it’s like to hold a microscope on the landscape of illness and pain in women. Norman wrestles with the same phenomenon as the knowledge and trust gap, the isolation of “deathyness” and being off-time from peers, but it does so in a much more personal and intimate way. However, its close focus on Norman and her experiences sometimes seems to elide her childhood traumas with her illness experience, and thus doesn’t do as effective of a job as Doing Harm or Invisible of digging into the complex history of women’s trauma and physical illness and how they are often mistaken for each other.

Building a Community of Women’s Voices

These three accessible texts should be of interest to those looking to understand women and illness, pain, and disability. I hope that researchers and scholars in pain, medicine, and disability will pick them up, and consider teaching out of them. However, these books are perhaps best suited to other women who experience pain and illness, as each book focuses on the ways that women coming together, talking with one another, sharing experiences has been one of the most effective ways of advocating for patient-centered research and creating community for those with illness.

It is worth noting that there are obvious limits to these texts: While each addresses the complications of race, transgender identity, and class, these books are still written by cisgender white women. While Doing Harm and Invisible do make sure to have space for interviews and research from the perspective of trans women and men and women of color (and Hirsch identifies as a queer woman), they still are written from a position of privilege. Ask Me About My Uterus, being a memoir, focuses more on Norman’s own experiences, although absolutely addresses class and difficulty she had in affording care and maintaining health insurance. Despite this shortcoming in these texts, there is much value particularly in the importance of sharing stories to build up community.

Each text concludes with the realization that the best strategy to begin healing the ways that women have been ignored, excluded, and made sicker by the medical system is to speak out and find others who share similar experiences. In my own quest to understand my illness, pain, and the ways that women are disbelieved and discounted in medical spaces, I hope to take this lesson from these books and continue to connect the voices in my own community to the broader coalition of women with chronic illness.

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