Disability Studies Community Blog
Review by Caitlin Ray, University of Louisville, Email: firstname.lastname@example.org
Keywords: chronic illness, memoir
When I was diagnosed with a chronic illness, I didn’t know what to expect. Like many faced with such a diagnosis, I didn’t yet know what “chronic” meant. I didn’t know how to manage doctors, find the right medications, or deal with side effects and complications. It took me years to find support systems, community, and the confidence to advocate for myself. That journey started, however, with an illness memoir I read shortly after being diagnosed. The discussions in that book around pain, illness, and the broader sociocultural meanings of both contextualized illness in a way that made sense, allowing me to identify with someone who was experiencing something similar.
I share how illness memoirs were pivotal for me because both The Lady’s Handbook of Her Mysterious Illness by Sarah Ramey and What Doesn’t Kill You: A Life with Chronic Illness—Lessons Learned from a Body in Revolt by Tessa Miller focus their audience on those newly diagnosed with chronic illness. Each book ends up being a blend of illness memoir and self-help, meaning they walk a fine line between storytelling and delivering lessons learned. There is much value in this goal, and certainly these types of books are useful for chronically ill people and their loved ones. Despite limitations of both books in representation and structure, each provides a useful perspective on living with chronic illness.
The Lady’s Handbook of Her Mysterious Illness by Sarah Ramey focuses on illnesses that are contested, misunderstood, and often misdiagnosed—what Ramey terms as a “mysterious illness” (8). She draws on her own experience with recurring digestive and gynecological issues that resulted in diagnoses including myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and complex regional pain syndrome (CRPS). She often alternates between a narrative of her (often traumatic) medical encounters and talking directly to readers—a group she calls WOMI (women of mysterious illness). The book is roughly divided into three sections:
- Her “descent” into the world of illness
- Her unending search to understand the complex and interconnected symptoms she has and the shifting diagnoses she receives for them
- Summarizes how Ramey took charge and found a path to better health, with advice to other WOMI on similar journeys.
Ramey’s style of writing incorporates her diverse and fascinating research into myths, medical scholarship, and literature in her health experiences. She then offers her research back to the audience in the form of lists, pieces of advice, and directives from anything to managing your gut microbiome to limiting stress. Ramey’s use of direct address, such as referring to the reader with endearments like “dear” or using the first person “we” to include author and audience, gives the book a unique style. However, this direct address can also be somewhat alienating. That is, despite Ramey’s moves to include both MOMI (men of mysterious illness) and HOMI (humans of mysterious illness), her digressions into her research on “the feminine” can read as gender essentialist and therefore exclusionary to readers who may not identify with the term “WOMI.” Additionally, this direct address does not always take into account the author’s own privilege. In the U.S. health system, Ramey is an outlier: Her parents are both doctors; she has the ability and means to move to various parts of the country; and there is no real conversation about how she accesses health insurance. However, even with these issues, Ramey’s direct address allows interesting structural choices in the book. At one point, after a particularly difficult recount of a traumatic medical procedure, she begins the third section stating that she would not tell more “sad stories” (286). By disrupting the narrative, Ramey draws back from what is the mainstay of many memoirs—retelling trauma. I found this refreshing.
What Doesn’t Kill You by Tessa Miller is a more structurally straightforward blend of memoir and self-help as she writes about being diagnosed and then managing Crohn’s disease and resulting complications. Miller, from rural Illinois but working as a writer in New York City, is diagnosed early on with a constellation of digestive disorders, first IBD and ultimately Crohn’s. Like Ramey, Miller also offers her own stories of diagnosis, a life disrupted by chronic illness flares, and the impact it has on her identity. However, the author is more transparent in her positionality as a white woman from the rural Midwest now living in New York City. This allows Miller to better communicate both her expertise and limitations of her knowledge in the self-help sections—she is clear about what her experiences are and how others may have vastly different ones.
The book is organized thematically, with chapters like “Blood,” “Work,” or “Fight or Flight.” Each typically starts with her experiences, such as a hospital stay or her relationships with her parents or boyfriend. Then, from those stories, she connects to broader points or lessons she has learned. One standout theme in this book is its focus on the connection between mental health and chronic illness. This appears most in the chapters “Old Trauma, New Trauma” and “The Brain and the Self,” where Miller discusses her own anxiety and PTSD from experiences in childhood that manifested as panic attacks after being discharged from a lengthy hospital stay. Throughout the book, she openly shares the work she does in going to therapy, taking SSRIs, and managing panic attacks. The focus on mental health also leads to the closing chapter of the book, where Miller includes 38 “experiences of joy” from other folks with chronic illness, who share gratitude for things from pets, to children, to “solid poops” (257). The specificity and honesty of these voices in this section save it from being overly saccharine.
Each book offers overlapping conversations about having chronic illness and what that means within a contemporary, Western healthcare system in the United States. Miller, more than Ramey, overtly calls for social and cultural change—highlighting (for example) not only her own difficulty in getting health insurance, but then details the different (and difficult) ways someone with chronic illness in the U.S. can access insurance. Because both books are U.S.-specific, and details issues with the U.S. healthcare system, the audience that will draw the most benefit will be those familiar with that system. However, readers outside the U.S. can still find value in these books, specifically in the discussions about identity and chronic illness.
Both Ramey and Miller’s books join the legacy of illness memoirs and the use of story to make sense of illness. These books strike me as a new generation of the illness memoir, written post-Affordable Care Act and specifically to an audience of the chronically ill (as opposed to a general audience). These traits make them potentially useful in a class about the illness memoir or medical humanities. However, one flaw of this genre is the necessity of a resolution. Arthur Frank in The Wounded Storyteller writes that the expected structure of an illness narrative is: “Yesterday I was well, today I am sick, and tomorrow I will be well again” (77). The trouble with chronic illness is that our experiences do not follow this narrative map. Yet, illness memoirs must end, and they often end with the author establishing a “new normal.” Both Ramey and Miller’s books want their illness to mean something and both communicate a resolution that highlights that—while precarious—they are healthier than when their illnesses started. The somewhat traditional narrative organization and relative privilege of both authors are the largest limitations to both books. This is why the increased visibility of chronic illness outside of traditional publishing is important. Twitter hashtags (like #disabilitytwitter and #NEISvoid), websites like Alice Wong’s Disability Visibility Project, and others offer alternative spaces that can resist the typical narrative structure of a memoir and provide a platform for those who don’t have access to such print mediums. Hopefully, in these alternative spaces, a more inclusive picture of chronic illness can emerge.
Frank, Arthur. The Wounded Storyteller: Body, Illness, and Ethics. U of Chicago Press, 2013.
Miller, Tessa. What Doesn’t Kill You: A Life with Chronic Illness—Lessons from a Body in
Revolt. Henry Holt, 2021. Ramey, Sarah. The Lady’s Handbook of her Mysterious Illness. Anchor Books, 2020.
This review was published as part of Disability Studies Quarterly, Spring/Summer 2022.
Beginning with Volume 36, Issue No. 4 (2016), Disability Studies Quarterly is published under a Creative Commons Attribution-NonCommercial-NoDerivatives license unless otherwise indicated.
Disability Studies Quarterly is published by The Ohio State University Libraries in partnership with the Society for Disability Studies.