Books
If there's one thing everyone should have learned by now, it's that no member of a marginalized group is obligated to explain their oppression to someone else. With that in mind, I've put together a list of 13 books about chronic illness that you should read instead of asking someone to explain it to you, because many spoonies don't have the time or the energy.
I have had a chronic illness for as long as I can remember, but it wasn't correctly diagnosed until I was 19 years old. Because my case is one of juvenile-onset, my symptoms are more severe than some who have my condition. For me, chronic illness means being selective in my choice of toothpastes and food items, tripling healing times for even the most minor wounds, and economizing the time I spend away from home. It means having to explain "spoons" and "flares" to new friends and colleagues who don't understand my situation, and also realizing that some people will never want to understand.
As a chronically ill person, I embrace identity-first language and the label "disabled," because I know that, no matter how well my prescription roster may control my illness, I will never be able to live life with the carefree nature of my bohemian, abled friends. With that being said, some people who have chronic illnesses prefer person-first language and do not identify as disabled, and that's OK. We're all in this together, after all.
For more information on what it's like to live with a chronic illness, check out the 13 books on the list below.
'Sick' by Porochista Khakpour
Porochista Khakpour's much-lauded 2018 memoir, Sick, recounts her efforts to find a diagnosis for the mystery illness that had plagued her for her entire life. But even after her diagnosis with late-stage Lyme disease, Khakpour's journey was far from over.
'Girl in the Dark' by Anna Lyndsey
What would you do if you were suddenly allergic to light? That's the question Anna Lyndsey must answer in her 2016 memoir, Girl in the Dark, which tells of how her previously uninterrupted life quickly moved indoors and out of all light.
'The Camera My Mother Gave Me' by Susanna Kaysen
From Girl, Interrupted author Susanna Kaysen comes this memoir, about the author's brush with vaginismus: a chronic condition in which the vagina forcibly and painfully refuses penetration.
'The State of Me' by Nasim Marie Jafry
Although The State of Me is a novel, it stands out on this list as an #OwnVoices story of living with chronic illness. A semi-autobiographical entry from Nasim Marie Jafry, this novel centers on a young heroine who will soon learn that her mystery sickness has a name — myalgic encephalomyelitis.
'Pain Woman Takes Your Keys, and Other Essays from a Nervous System' by Sonya Huber
An essay collection centered on the author's life with chronic pain, Sonya Huber's Pain Woman Takes Your Keys attacks her condition from all angles, including her treatment from the medical establishment and the interpersonal relationship issues that sickness of such a caliber may cause.
'The Collected Schizophrenias' by Esmé Weijun Wang
Whiting Award winner Esmé Weijun Wang talks about living with late-stage Lyme disease and schizoaffective disorder in her essay collection, The Collected Schizophrenias, which quickly became a New York Times bestseller when it was published in February 2019.
'In the Kingdom of the Sick: A Social History of Chronic Illness in America' by Laurie Edwards
In In the Kingdom of the Sick, patient advocate Laurie Edwards exposes the myriad obstacles chronically ill patients face in the U.S. health care system, including misdiagnoses and the dismissal of women's symptoms by medical professionals.
'Now and at the Hour of Our Death' by Susana Moreira Marques
An oral history of death and dying in a remote corner of Portugal, Susana Moreira Marques' book shines a light on the lives of people in palliative care, their families, and their caregivers.
'Ask Me About My Uterus: A Quest to Make Doctors Believe in Women's Pain' by Abby Norman
Inspired by the author's quest to have her endometriosis diagnosed as anything more than a "heavy period," this memoir turned self-advocacy guide examines the hurdles that people with uteri must cross in order to have their health care needs taken seriously by doctors.
'The Cancer Journals' by Audre Lorde
Sister, Outsider author Audre Lorde's The Cancer Journals combines memoir and essay in an exploration of what breast cancer means in a society obsessed with the bodily "perfection" of women.
'Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine' by Michele Lent Hirsch
A collection of true stories about young women with serious medical issues, Michele Lent Hirsch's Invisible is an excellent resource for those who have an invisible illness, or who believe that a person must look disabled in order to be disabled.
'Tell Me Everything You Don't Remember: The Stroke That Changed My Life' by Christine Hyung-Oak Lee
After her stroke at age 33, Christine Hyung-Oak Lee found herself unable to make new memories or easily form sentences. She began using a notebook to record her thoughts, feelings, and the day's events, and it is from those writings that she drafted the material for this memoir of illness and recovery.
'The Two Kinds of Decay' by Sarah Manguso
Mysteriously paralyzed in her twenties, Sarah Manguso endured the routine replacement of her blood plasma through apheresis dozens of times in an attempt to rid her of her symptoms, before her doctor realized that there might be a better way to treat her condition.
