In the course of doing my doctoral research on women’s health with a special focus on chronic pain, I came across a book published by the Harper Perennial imprint of HarperCollins (June, 5 2018) written by Porochista Khakpour called SICK. The book is a memoir of her painful journey of living with a chronic illness — late-stage Lyme disease, which is caused by the bite of a tick that carries the Borrelia bacterium. Her story begins with her birth in Tehran, her upbringing in the outskirts of Los Angeles as an immigrant, coupled with her repeated misdiagnoses, as well as the myths of recovery and later the medical addiction she was subject to; Sick reminded me of the stories I have heard from the Dalit women in rural Karnataka in the course of my research.
Author: Porochista Khakpour
Publisher: Harper Perennial imprint of HarperCollins (June 5, 2018)
Genre: Non-fiction and memoir
Khakpour builds her narrative in Sick using the various places she has lived in as geo-political and sociological settings within which she contextualises her struggles with Lyme disease. Through Greater Los Angeles, New York, Germany and New Mexico – regions where she has either lived or travelled to for writers’ residencies, teaching assignments or treatments, she details the challenges of living without a real diagnosis while continuing to feel chronically unwell. As she describes her struggle with not being insured for health care, one is reminded of the out of pocket expenses one incurs for healthcare in India as well. Across the world, most single women shudder with financial apprehensions and fear for their recovery when they are faced with undiagnosed ailments. Strikingly, in Sick, the author also describes her personal life and her trysts with lovers, both women and men, and how her personal belief in her own independence as a human being has caused clashes and stereotypical power struggles — experiences shared by many single women globally.
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The author’s uncertainty of her health condition results in a long-lasting and complex dependency on pharmaceutical drugs provided by physicians to give her relief and the resulting psychological impact is devastating. The pill bottles that line her cabinet offer her addiction but also the empty promise of taking away ill-health.
Sick is a memoir that touches on another interesting aspect, that of alternative treatment protocols. Although Khakpour visits allopathic doctors and hospitals during emergencies, she also meets various healers and tries numerous treatment processes, including bee sting therapy. She goes on to explain how the dominant allopathic biomedical system is as fragile as other alternative therapies and this challenges a dominant paradigm both of biomedical treatment and the pharma industry. In India it is a common phenomenon for even the public health system to indiscriminately hand out pain-killers that are extremely harmful for the body, especially kidneys and the digestive system. The author also explains how, when she wants to wean off from certain medicines, since the physicians are clueless about her condition they dissuade her from discontinuing them, eventually causing her to form an involuntary addiction; this is a phenomenon common in rural India that I have encountered through my research for women suffering from chronic pain.
This story of pain and survival is a candid and honest account of the ramifications of living with a disease and it boldly examines and lays bare the impact of chronic illness in a woman’s life. The reader is made acutely aware of the pain and frustrations of Khakpour, as one travels with her to numerous doctors, healers, mystics and alternate sources of remedies in her quest to find relief and healing in Sick. She doesn’t lose hope and her resilience is both astounding and inspiring. The author has lived with her illness and subsequent breakdowns for decades, publishing two books and receiving numerous accolades and significant recognition as an author. Through her illness and breakdowns until this book came out she had published two books and received various accolades and recognition as an author.
History tells us that the world we live in has been and continues to be obsessed with controlling a woman’s sexuality and reproductive powers, and as a result there is abundant funding for reproductive and maternal health in comparison to other illnesses that women face. As we understand from Khakpour’s narrative, this is the case not just in India but also in the places the author has lived in. Sick also reveals how the author had to hide her health condition from friends and acquaintances as she was unable to explain to them her overwhelming feeling of ill health that in reality didn’t have a label for a long time. As a result, the people around her, her family, friends, partners and even health care workers attribute her pain and struggle to being ‘in her mind’ to the extent that the author herself begins to believe and has herself admitted to the psychiatric ward. This is but one among the many examples of the repercussions she faces in her long and continuing grapple with Lyme disease. Eventually the doctors evaluate her and ask her to go back home the same day.
Whilst Sick allows the reader to chart the terrains of Lyme disease, it also embodies the realities of the life of women who feel sick and know they are sick and are yet subjected to questions, raised eyebrows and irrational doubts when they are unable to name the disease due to a lack of a known diagnosis. This is also the case of chronic pain that many times is medically unexplained and causes not known from a physiological perspective. Many times throughout the memoir, the author has shown that her closest family, lovers, friends and even physicians have subjected her to this disbelief and have invalidated her lived experience.
Khakpour’s life story of a young woman seeking a place in her socio-political and geographic settings resonated very deeply with me, as I am someone who has lived with chronic body pain myself for 35 years, without a satisfactory diagnosis. During the course of my research on chronic pain, I listened to similar narratives of women from all castes and class who face humiliation and indignity due to their illness that has no (medical) explanation and at times is incurable. The devastating impact of the author’s pharmaceutical addiction coupled with the trauma and uncertainty brought by chronic illness, the difficulty she faces while trying to acquire financial stability while also trying to find a diagnosis for her ill health draw the reader into a narrative of a desperate search for freedom, mental and physical wellness and personal stability in Sick.
Sathyasree Goswami, currently lives in Bangalore and works as a researcher, development practitioner and a psychotherapist. She is also pursuing her PhD from TISS Mumbai and consults with various development organisations in South Asia. Follow her on Facebook and LinkedIn.
Featured image source: New Yorker