1. Academic patients and patient academics?

The Indian context has witnessed its share of cancer memoirs by various professionals, including doctors, film stars, and sportspersons. While some of these autobiographical works became popular because their authors were already famous, there are also instances in which the author of the work became popular because of their memoir. Paul Kalanithi, a medical doctor who wrote the memoir When Breath Becomes Air is one such example.Footnote ¹³ While there may be many reasons for this memoir becoming popular, one cannot ignore or be surprised by the fact that a doctor writing their narrative of living with cancer in non-technical language and as a patient was likely to draw the most attention from a growing population of middle-class citizens becoming diagnosed with cancer. Kalanithi’s memoir not only documents his personal experiences of living with a dreaded disease but also adequately captures how his professional standing as a medical doctor impacts his experience of cancer and vice versa. Kalanithi’s memoir pushes us to consider the exchange that transpires between one’s professional self and one’s patient-self and how the two interact, even as almost every diagnosis of cancer attempts to stamp out every other self and foreground only the cancer patient-self.

Looking for texts that centre academic professionals’ cancer experiences brought us to the Malayalam film Njandugalude Naattil Oridavela. Footnote ¹⁴ Professor Sheela Koshy, a professor of Botany, goes to an oncologist after finding a lump in her breast, doubting if it is cancer. The doctor confirms the early-stage breast cancer and charts out further plans, including chemotherapy sessions. Professor Koshy, who has always been sceptical about doctors and medicine in general, asks the doctor what guarantee he can give that she will survive even if she undergoes the treatment. He asks Professor Koshy to consider that even though she teaches all her students impartially in a college classroom, some students pass, others fail, and a few secure top ranks. Similarly, he suggests that medical treatment cannot guarantee the same outcome for every patient. However, he adds that he expects Prof Koshy to achieve a “top rank.” This assurance convinces her to trust the process. As academics within the university system, familiar with how merit operates and shapes our everyday existence, we found this metaphorical use of student performance to refer to patient recovery both intriguing and startlingly accurate.

A range of conjunctive factors determine a patient’s success, erroneously assumed to be singular—how they adopted or embraced, the treatment. Interested in further exploring the conceit of using academic progress as a framing metaphor for the lived experience of cancer, we present our study of Professor Chandrika Balan’s cancer memoir Njandukalude Naattil Oru Idavela (An interval in the Land of the Crabs: Cancer memoirs).Footnote ¹⁵ This text informs the earlier cinematic adaptation.

Professor Chandrika Balan, a professor of English literature at All Saints College, Thiruvananthapuram, is also a fiction writer, translator, and critic in English and Malayalam. Writing under the pen name “Chandramathi,” she has received multiple awards and recognitions for her contributions as both a writer and a professor. In her memoir, she documents her everyday experiences of living with cancer. Diagnosed with a rare form of nasal cancer, Chandramathi first wrote about her experience with cancer in 2002 in the form of a short memoir in the Malayalam daily Malayala Manorama. Subsequently, the piece was expanded into a full-length memoir, published in 2006 by DC Books as Njandukalude Naattil Oru Idavela. After the release of the first edition, the author received numerous letters and phone calls of appreciation from cancer patients, caregivers, and doctors. However, some readers also criticised her for assuming the position of a “survivor” when, in reality, a person with cancer remains a “patient” for life.

Chandramathi’s reflections on illness and healing foreground how recovery is shaped by the patient’s subjective orientation toward treatment. The struggle to construct an account of herself as a patient also reveals a struggle over language, tone, and self-definition. Through this, she also addresses the clinical setting, which demands brevity, clarity, and the reductionism of identity to medical terms. As a writer and teacher of literature, Chandramathi yearns for an existence beyond her medicalised identity, and this memoir is an attempt to reclaim and articulate that self.

Chandramathi’s initial struggle to get a diagnosis leads her to approach doctors across different treatment systems before eventually turning to allopathy. Searching for an illness framework that could holistically account for her experience, Chandramathi sought various medical systems because she critiqued allopathy for its fragmentation into specialised branches and its implicit separation of mind and body, which overlooks the patient as an integrated whole. After confirming the presence of cancer in her body, Chandramathi told her husband,

Chandramathi walks into her first chemotherapy session, burdened by the fear and stigma that cling to the word itself. Within the four walls of the chemo-room, listening to the scream of a woman crying for death rather than from pain, and a man vomiting continuously brought a wave of strange fear in her. She sat there listening to St Peregrine’s (the saint of cancer) prayer. Then, a small girl who had already undergone eight rounds of chemotherapy came to her. She spoke about the reactions she experienced and the diet she followed. The courage of an 8-year-old burst the bubble of fear and stigma surrounding chemotherapy. In that moment, Chandramathi realised that, more than any doctor or book, it is lived experiences that truly convince a patient.

Through her memoir, Chandramathi critiques biomedical approaches that overlook the subjective and interpretive dimensions of illness, a concern that becomes evident in her reflection on how the standardised procedures of the magnetic resonance imaging (MRI) scan fail to account for her claustrophobia. For her, the MRI becomes not merely a diagnostic procedure but an intensely affective encounter marked by fear and anxiety. Fear, as Sara Ahmad claims, cannot be neatly laid out as an immediate feeling.Footnote ¹⁷ It is also an opening up of the “past histories of association.” Perhaps one of the most enduring epistemic contributions of cancer autopathographies, in Chandramathi’s and other essays we discuss later, is the record of fear as a crucial infrastructure of living with the disease.

2. Chandramathi discovers a genre!

Living with cancer has given Chandramathi a unique lens through which to view her own discipline. The title of the book, Njandukalude Naattil Oru Idavela (An interval in the Land of the Crabs: Cancer memoirs), is a critical intervention that implicitly challenges the metaphor of cancer-as-crab. While writing the memoir, Chandramathi was unaware of the genre of “autopathography.” Chandramathi defines autopathography as writing inspired by illness that narrates the lived experiences of disease, which she translates as rogathmakadha (a portmanteau of illness and autobiography). Through her emphasis on the patient’s interpretive practices and affective life, she presents autopathography as a genre that foregrounds subjective experience beyond biomedical discourse. She further argues that the state of being ill reveals otherwise latent states of mind, such as spirituality and artistic impulse.

In the appendix of the book Autopathography and Me, the author writes about discovering the genre of autopathography and the belated recognition of her writing as an autopathography.Footnote ¹⁸ She chose to write a memoir rather than a fictional work about her experience with cancer because she thought the latter might not allow the illness to remain at the centre of the narrative. Lamenting the inadequacy of language to express the experience of illness, she reflects that it was only after she began writing her memoir that she could fully understand Virginia Woolf’s remark about the dearth of language in English to articulate the experience of illness.Footnote ¹⁹ The brief discussion of multiple autopathographies reveals how the author approaches the text through her own experience of living with cancer, as well as her position as a memoirist reflecting on that experience.

Through her engagement with these narratives, she explores how writers with cancer negotiate their experiences of cancer. At several critical moments in the memoir, Chandramathi recalls scenes, ideas, and quotations from autopathographies she has read, allowing these remembered texts to enter into conversation with her own experience. Reflecting on Anatomy of an Illness As perceived by the patient by Norman Cousins, Chandramathi argues that physicians must attend not only to the patient’s body but also to the patient’s mind.Footnote ²⁰ She critiques the biomedical tendency to treat the body and mind as distinct entities. Her reflections further dwell on the structures of hospitals with crowded corridors, long queues for doctors’ consultations, multiple scheduling and rescheduling of scans, the shuttle between different specialist departments, and, finally, the innumerable machines to quantify the “cancerous body.”

Diagnosed with ankylosing spondylitis, Norman Cousins left the detrimental hospital environment to recover in a hotel using nutrition and laughter, asserting the mind’s power in shaping healing and resilience. The memoir argues that positive thinking can produce beneficial effects, highlighting how the mind shapes the experience of illness. Drawing on multiple letters and emails that highlight the importance of laughter, the memoir views it as a form of medicine and situates laughter clubs as potential sites of healing. Chandramathi reflects on the laughter clubs in her neighbourhood and reflects on what their practices of collective laughter reveal about illness, healing, and everyday resilience.

In the chapter “Ultsavakaalam (Time of festival),” Chandramathi emphasises the importance of remaining happy and continuing to laugh.Footnote ²¹ Being witness to her husband’s emotional fatigue, serving as the primary caregiver to her ageing parents, and combating her constant fear of being a burden to her children all contribute to her inner turmoil. She finds solace in reading and in the companionship of her writer friends, both of which help her navigate this chaos with strength. Reading the works of Veloor Krishnankutty further deepens her understanding of laughter.Footnote ²² She reflects that these writings helped her accept the scientific truth that indeed laughter can trigger the release of chemicals in the body that reduce stress. For Chandramathi, therefore, laughter is not merely an expression of joy but also a form of therapy, resistance, and survival. “When chemo soldiers were invading my body, I was on a national tour with Thengana Raghavan (one of KV Mohankumar’s characters).”Footnote ²³ Satire’s potential to shake her out of the mandated sobriety that the disease and its treatment regimen had imposed on her brings a critical yet necessary recognition of the performative impositions that structure the experience of cancer. As in other instances that she documents, in this moment too, her narrative lays bare how a literature teacher learns anew features of literary texts that she had previously only known and taught in theory.

While reading Michael Gearin-Tosh’s Living Proof: A Medical Mutiny, Chandramathi learns to challenge the notion of “medical diagnosis” as the singular truth about one’s illness.Footnote ²⁴ That Chandramathi reads Gaerin-Tosh, a well-known chemo rebel, let us reflect on this chain of literary–therapeutic praxis when a literature teacher in Kerala reads of an Oxford drama teacher’s attempt to rewrite the cancer-chemo script by ushering in an alternative method of treatment. It is as if one literary scholar shows another how defamiliarisation, that great power of drama must be embodied and lived if one were to succeed in dealing with cancer. As we read her memoir, it becomes clear that her documenting of every autopathography in her narrative, is revelatory of her readerly position, informed by literary training that recovers the meaning of a text through its formal elements, recognising the potency of form as content. Chandramathi recognises the performative nature of a doctor’s diagnosis–the fact that it is an utterance that creates subjects–the subjectivity of a patient who has no hope, who must die, or who is already scripted into a tragic narrative. It is indeed this training that prompts her to document the situational irony of Gaerin-Tosh’s reversing an oncologist’s oracular pronouncement by embracing humour.

Although doctors estimated his chances of survival at only 0.005 percent, Gaerin-Tosh lived for many years after discontinuing his treatment. He adopted his own regimen, which included nutritious food, vitamin supplements, and ancient Chinese yoga practices. In documenting his own life, Gaerin-Tosh also recounts the experiences of friends who chose to follow their treatment, only to be told eventually that the hospital could do nothing more for them and that they could return home to die. The patient’s utterance and their ability to challenge and rewrite the medically scripted narratives of illness redirect attention to patient agency, to what the patient thinks and feels, and to their authority over their own body and mind.

Lata Mani’s Interleaves explores how illness can transform a person’s life, initiating physical, intellectual, and spiritual changes.Footnote ²⁵ Drawing on this, Chandramathi suggests that surviving a medical condition expands the mind’s boundaries, fostering positive thinking, deepening empathy, and motivating social engagement and care. Bruce Feiler’s cancer memoir, The Council of Dads: My Daughters, My Illness, and the Men Who Could Be Me, reminds Chandramathi of different ways of coping with cancer by relying on groups of people.Footnote ²⁶ The memoir recounts a father’s attempt to secure the upbringing of his daughters with the help of a circle of close friends after being diagnosed with bone cancer. As the book’s title suggests, it inspired the formation of similar support networks worldwide. Chandramathi emphasises the importance of support systems that treat cancer patients not as bodies with cancer waiting for death. For her, the encouragement to continue writing came from her writer friends, who did not see her as dying. It is in this context that she turns to The Diving Bell and the Butterfly to reflect on how writing while being ill can be therapeutic.Footnote ²⁷ Although the book is not primarily centred on the author’s illness experience but rather on the lived experience of bodily paralysis, Chandramathi emphasises that the very act of writing functions as a therapeutic practice. Bauby’s book is, of course, the best example of writing about an experience that conveys to readers the lived reality of being locked in an immobile, unspeaking body. The memoir is a testament to the fact that writing is a crucial way of communicating with the world that assumes standard/normal ways of embodied living. Bauby’s memoir also convincingly demystifies the act of writing as an individual one, perhaps startling for a writer like Chandramathi to encounter, given that he and his communication therapist build a system of writing that deploys the movement of his one functioning eye as she lists the alphabet to spell each word.

3. Academic labour and the interruptions of cancer

Intellectual labour thus emerges in the memoir as a crucial strategy for sustaining a sense of purpose and meaningful negotiations with cancer. Chandramathi illustrates this through an incident involving her friend, Lalitha Lenin, a renowned Indian Malayalam poet and academic. When both of them received invitations to present papers at a national seminar, Chandramathi initially attempted to decline due to her chemotherapy treatment.

However, the insistence of Lalitha and her husband forced her to attend the seminar. Preparing the paper and participating in the seminar triggered a period of profound introspection for Chandramathi. She grappled with deep-seated concerns regarding her professional future, the fear of physical collapse or vocal failure during her talk, and the anxiety of public scrutiny over her altered physical appearance. The eventual success of the presentation and the positive reception of her paper became crucial to the narrative. It reassures her that cancer has not diminished her intellectual abilities and enables her to reclaim her academic identity. Here, Chandramathi frames intellectual labour not merely as professional work but as a form of therapeutic practice that restores confidence and agency. Her scholarly interactions with postgraduate students, particularly the hours spent discussing their projects on days when her blood count allowed it, further reinforce this idea.

In the chapter “Towards the Greenery,” Chandramathi recounts her first day of radiation therapy.Footnote ²⁹ Lying alone beneath the gigantic machines, she experiences the scene as the unfolding of an absurd play. The radiation mask, made with precise measurements, no longer fits due to facial swelling from the steroids. “Big face and small mask. It is like one of the characters from the Theatre of the Absurd that I teach in postgraduate classes.”Footnote ³⁰

In this moment, the author inhabits the very condition she once analysed academically, and the reader witnesses the embodied literary theory become a material reality. The ‘big face’ and the ‘small mask’ symbolise the medicalised standardisation of the body and the difficult reality that disease and treatment impose on it. She confronts the situation like an absurdist character trapped within a circular plot structure and illogical speech. Illness estranges her from her own body, transforming the familiar entity into an unfamiliar, theatrical, and almost grotesque one—a condition the author portrays and experiences simultaneously.

The memoir engages with the idea of “estrangement” at multiple levels, beginning with the estrangement from one’s own body. The author discusses how it blurs the line between cancer in the body and the cancerous body. Amid the absurd radiation, she speaks of how everything once familiar began to become unfamiliar. The memoir highlights the compulsion of perceiving the body through the lens of illness and how this altered mode of perception gradually becomes an everyday reality. The estrangement does not remain confined to the hospital space. Chandramathi speaks about how the familiar space of home became an unfamiliar space after her return from the hospital. She expresses this estrangement in a short poem included in the last chapter of the memoir:

Aloneness solidified

Lies frozen within the four walls.

You with your mobile.

I with my book.

The silent TV in between.Footnote ³¹

The aloneness depicted here is solidified into a permanent emotional condition and is no longer momentary. The short, fragmented lines create a staccato effect, with emotions emerging through rhythmic disruption. The book, which marks the author’s habit of reading, and the mobile phone, which recurs as a scene in the memoir, function as Eliot’s objective correlative, allowing emotion to emerge through external details and rhythmic disruption.Footnote ³² The tension between physical proximity and emotional distance highlights the simultaneous presence of mobility and stagnation. While cancer signifies relentless movement from one cell to another, from one medical specialist to another, the patient remains confined within the same repetitive spaces. Thus, the poem captures a paradoxical condition in which everything within the diseased body is in motion while the surrounding life becomes frozen and stagnant.

Furthermore, as unfamiliarity and estrangement continue to increase both within the body and in the world around her, reading becomes uninteresting, and writing ceases to occur to Chandramathi. It is at this moment that a call from a publisher reintroduces her to translation. Translating Lawrent Graff’s book Happy Days became a way of regaining familiarity, which she continued for a month alongside her radiation sessions.Footnote ³³ Translation becomes a practice through which she negotiates illness, estrangement, and recovery.

The memoir also portrays how the diagnosis of cancer imposes a perceived ultimatum on Chandramathi’s life. One such instance involves a Ph.D. student who regularly visits Chandramathi to obtain her signature on the fellowship form. During one of those meetings, the student conveys that some members of Chandramathi’s department believe she will not recover from cancer and may soon opt for voluntary retirement. The conversation exposes the general assumption about the illness experience of cancer within academic spaces, where “prolonged” illness becomes a sign of professional withdrawal. Although the encounter unsettles Chandramathi and makes her reluctant to meet the student again, she nevertheless continues to fulfil her advisory responsibilities.

Chandramathi continues to perform her professional role as if her days are counted. She attends college, teaches as usual, and uses humour while teaching difficult essays. However, her students’ repeated request to ‘please take rest’ signals the tension between her own perception of herself as a professor and others’ tendency to recast her primarily as a patient. This dissonance becomes especially evident when she receives the Alumni Association of St Berchmans College’s Best College Teacher in Kerala award in 2002. Rather than taking the moment as the culmination of her achievements, she interprets it through the lens of impending loss, imagining that the recognition she has built as a writer and teacher will soon give way to collective mourning.

4. Cancer as an epistemic position

Just as Chandramathi’s disciplinary orientation within literary studies enables her to participate in a give-and-take with the autobiographical experience of cancer, Seemanthini Niranjana, Duggirala Vasanta, Anita Ghai, and Sarojini Nadimpally draw out distinct disciplinary relations with their cancers and, in turn, explore their research fields anew. In this section of the paper, we turn to a close reading of women academics’ accounts of cancer experiencesin scholarly publications native to their fields and disciplines—sociology, rehabilitation sciences, disability studies, and public health. It is important to note that while literature and literary studies seemed to have carved out a readily available writerly space that an academic living with cancer could occupy, as in the case of Chandramathi, the social scientific disciplines, to which the present set of academics belong, seem to need to forge new, unconventional scholarly forums and methodology to ensconce any writing about disease experiences and narratives of illness.

Duggirala Vasanta and Seemanthini Niranjana’s association with Anveshi, an independent research centre for women’s studies, brings them the opportunity to co-author a chapter for the edited volume titled Critical Medical Practice, co-edited by a medical doctor and two social scientists and published in 2010.Footnote ³⁴ While the book’s very motivation is to interrogate different aspects of medical practice, the chapter titled “Patient Questions” is included in the volume’s “Thinking with the Patient” section, which explores the political potential of a patient’s subject position to better understand the application of medical knowledge into practice and the habitus of medical institutions and their affiliate practices.Footnote ³⁵ We note this because the book made a crucial contribution to academic scholarship focused on feminist research, and it was feminist research that had developed the intellectual infrastructure to support other explorations from subject positions of vulnerability.

Over its 20 pages, the two authors present a genre-defying series of accounts, or, as their introduction refers to them, narratives, that focus on various aspects of the clinical encounter: between patient and doctor, between each patient and her distinct experience of the specific cancer, and finally, between the two patients. Two moves they make in this chapter draw significantly on feminist scholarship they were both familiar with: one, the epistemology of medical knowledge, and two, the subjectivity of a position of vulnerability.

The first narrative, titled “Two tales of breast cancer” by their admission, “addresses one of the key epistemological problems in medicine, viz., how subject-object relationships are worked out in practice.”Footnote ³⁶ It consists of a series of combinations of box text, which includes the doctor’s hospital chart entry, offering an object-level account of the patient, labelled “the doctor’s tale,” and a narrative of experiences of that same clinical moment recalled by the patient, labelled “the patient’s tale,” which is the subject-level account of the patient’s experiential perspective. While the two accounts clearly present different frames of a single event, the objective of the juxtaposition is to underscore the absence of communication between these two realms of experience: the absence of connection, the absence of information, and, quite naturally, the absence of consent.

Vasanta writes about the moment of the first discovery of the lump in her breast as a time when everything seemed to be going very well in her professional and personal life. She had secured two research grants and was looking forward to working on the projects. Once the surgery was done at the teaching hospital where she opted for her treatment regimen, Vasanta contacted the institution’s head to request data and materials from one of the divisions so she could continue her work as she moved through her treatment. Early in the treatment period, she recalls reading anything that came her way. Soon enough, her reading came to focus on the different aspects of her diagnosis and treatment: about procedures used to detect cancer, drugs used in post-radiation therapy, specific organs in the body that she wanted to learn about, afresh, and so on. The other strand of Vasanta’s narrative, the doctor’s tale, held its clinical content confidently and authoritatively, while her first-person commentary grew crowded with emotions, people, academic work, and frustration. In one moment, when she learns from the radiologist that she was affected by a variety of pneumonia because of the radiotherapy reaching a part of her lungs, she is frustrated that she was not informed about the side effects. The radiologist’s comment that about 50 percent of patients undergoing radiology experience this specific side effect does not provide the consolation it was meant to. At the beginning of her radiotherapy sessions, when she enters the radiology division for the first time, there is a group of male professionals discussing her treatment routine, of whom one asks her if she has brought with her a female attender who could assist in holding the robe while her radiation procedure commences. She had not been informed in advance about this requirement!

Vasanta’s professional position as a researcher in the field of rehabilitation sciences perhaps keeps her alert and perpetually startled by the gaps in communication that hold the bare threads of the patient–doctor relationship in place. The time of her cancer treatment is also an education as she learns about the social and psychological aspects of uninformed consent. Repeatedly, despite her professional interest and orientation, she is treated as an object by the doctors and other professionals. There is no room for information to be given and even lesser room for dialogue. A notable observation she makes about the dynamics of the radiation sessions is perhaps instructive. To help patients manage their nerves in the radiotherapy room, the staff play music during the sessions, but Vasanta is surprised that patients are not asked to bring their own music.

Seemanthini Niranjana’s singular patient narrative of living with acute pain that could not be appropriately diagnosed until she received radiological treatment for it draws the reader into the patient’s being and everyday encounters with things one has to learn to do differently. Niranjana takes the reader along as an eyewitness on her journey of cancer diagnosis, or must one say, rediagnosis, given that her rare variety of cancer was discovered much earlier. She records the different moments of pain that disrupted the everyday, but most significantly, the struggles with making those different experiences of pain translate into a diagnosis in those clinical encounters with doctors and other specialists. It is not surprising that towards the end of the chapter, in the dialogic section, where Vasanta and Niranjana speak about their medical experiences, they strongly argue for the need to develop a language in which one could write about one’s medical experiences while documenting the difficulty of being reduced to an object during treatment. Niranjana articulates this need for a new language while thinking about different ways to make patient advocacy groups visible or accessible within institutions such as large hospitals:

Niranjana’s narrative intricately explains how being treated as an object in the cancer treatment contexts severely impacts one’s sense of self, an experience that they both share—what cancer disrupts is not experienced only in terms of symptoms of a new form of embodiment and related psychic state, but a disruption caused by the ensuing medicalisation. This phenomenon of being forcefully turned into an inactive entity splinters one’s familiarity with oneself, a lesson medical practice must be tutored in, which could perhaps best be done by urging the medical professional to know or understand it. Their use of the metaphor of translation underscores the distinct discursive contours of the two constellations of knowledge: the doctor’s and the patient’s. Medical knowledge and, by extension, its application needs to know what it cannot know by itself—the epistemic potential of lives lived in illness. Niranjana’s sociological training shapes her perspective, one that seeks to recover the patient’s sociality to inform the practice of medical encounters, which are usually arranged under the clinical gaze of the medical professional.

Turning to Anita Ghai’s autoethnographic study of living as a disabled cancer survivor during COVID-19 in the Indian Journal of Gender Studies, we find that the feminist orientation to engaging with one’s illness continues.Footnote ³⁸ As a person who lived with polio, which informed her scholarship in disability studies, Ghai’s scholarly documenting of her cancer experiences foregrounds several social realities of medicalization, a phenomenon that both gender studies and disability studies have critically analysed. Ghai and Tenneti describe her experience with second-stage breast cancer as a profound “biographical disruption” following the sociologist Micheal Bury that proved significantly more “terrifying, daunting and inexplicable” than her lifelong experience with polio.Footnote ³⁹ Interestingly, what she develops in her essay with Suchaita Tenneti is a critique of Bury’s theory of biographical disruption by analysing the limitations: one, that disabled people and people living with other chronic illnesses are not a part of the conceptualisation and two, that extrinsic extraordinary circumstances such as COVID-19 are not accounted for by the theory. While she had integrated her physical disability from polio into a sense of “biographical flow,” the cancer diagnosis devastated her world and broke her “fused thread of temporality,” causing her past to collapse into the present and stripping the future of its significance.Footnote ⁴⁰ This illness forced her to confront insidious embodied vulnerabilities that were entirely new to her, leading to intense trauma and a fundamentally shifted relationship with her own body.

Ghai also strongly critiques the “warrior” and “survivor” narratives commonly found in cancer literature, which urge patients to “fight” as if survival were a matter of personal strength. She found that reading successful survivor stories actually increased her anxiety because she felt she had “no rebelliousness left” to cope with the cumulative pains of her previous heart surgeries, polio, and new cancer treatment.Footnote ⁴¹ She explicitly rejects the label of “survivor,” arguing that the idiom of conquest celebrates the living while indirectly reprimanding those who “did not fight hard enough,” placing an unfair burden of personal responsibility on the patient.Footnote ⁴² Ghai’s familiarity with how deeply cultural narratives shape the lived realities of disability and chronic illness robustly informs her need to contest the discursive contours that a cancer-affected person must fit into.

Further, Ghai’s familiarity with the critique of the medical model, as a disability studies scholar, informs her recognition of the deficit model that seeps into the pathologisation of people living with cancer and, in particular, people with physical disabilities affected by cancer. Community and interdependence, identified as significant features of disabled people’s lives in India, emerge repeatedly throughout the study.Footnote ⁴³ Writing about the disruption of her mother’s caregiving actions towards her, Ghai recalls the despair of not being able to touch her mother—her daily emotional resource—because of her COVID-19 diagnosis. Even in the absence of an expressly articulated theory of care in the paper, reading about Ghai’s experience of losing caregivers during the nationwide COVID-19 lockdown reflects and extends her earlier work on care as a contested domain at the intersection of feminist and disability studies activism in academia.Footnote ⁴⁴

As Ghai does, so does Sarojini Nadimpally, a public health researcher, criticise the battle metaphor, continually framing the experiences of surviving cancer. She writes in an article in the Indian Journal of Medical Ethics, a well-known journal in interdisciplinary social science fields affiliated to medicine, that illness is never merely a biological event, but a disruption of the emotional, social, and economic structures that support a person’s life.Footnote ⁴⁵ She reflects on how her professional understanding of health systems became a deeply embodied reality, illustrating that bodies are classified and valued by market forces and institutions. The diagnosis forced her to navigate a world that abruptly narrowed to the language and routines of the medical system, revealing a stark contrast between her previous academic knowledge and the lived experience of navigating a life-threatening illness.

One of her primary realisations involves the deep structural and economic inequities embedded in the Indian healthcare system. She observes a divided landscape in which under-resourced public hospitals serve the poor, while advanced care in private hospitals remains prohibitively expensive for most. The sources highlight that targeted therapies, such as a single dose of a combination drug costing approximately Rs 2.6 lakh, are financially out of reach for many, often forcing families into debt or causing them to abandon treatment entirely. Furthermore, she points to invisible costs that are rarely acknowledged in public health, such as the loss of income for caregivers and the profound mental anxiety borne by families. Ultimately, she acknowledges that her own treatment was only possible because of the privileges of her class, education, and professional background, which raised ethical questions about those who lack such support networks.

The author also critiques the limitations of the biomedical framework, noting that the “narrow medical gaze” often treats the patient as a set of disconnected parts rather than a whole person. She found that medical procedures frequently overlooked the profound exhaustion, grief, and disorientation she experienced, focusing instead solely on the clinical removal of the tumor.Footnote ⁴⁶ In contrast, she realized that peer solidarity provided a vital, shared vocabulary that the formal medical system often lacks. These peer networks offered practical insights into “unlisted” side effects—such as hair loss, dizziness, and painful skin reactions—that were frequently normalized or undocumented by physicians constrained by clinical frameworks.

Finally, her experience led to a reimagining of public health centred on an “ethics of care” and collective solidarity. She argues that healing is a deeply collective process rooted in interdependence and reciprocity, rather than a matter of individual endurance. This realisation prompted her to reject common metaphors of “fighting” a “battle” against an external enemy, viewing cancer instead as a condition to be reconciled with and navigated with compassion. She reinforces the idea that timely and equitable cancer care is not a privilege but a basic ethical and legal right that should not be determined by one’s class, caste, or geography. Through these connections, she views solidarity not merely as a professional network but as a political and ethical form of care shaped by shared struggles.

5. Recognizing disciplinary affective infrastructure

We bring these texts together as a way of reflecting on academic labour while living with cancer. Given the dominant perception of cancer as a pre-death stage, we read these diverse writings as a collaborative counternarrative to that dominant expectation. Our aim is not to valorise cancer or its lived experiences, but to consider how the lived experience of cancer and academic pursuits are mutually dependent when viewed through the expressions and experiences of these women writers. Further, a crucial recognition all our writers have is that expertise on cancer belongs as much to the patient as to the oncologist. In different ways, the memoir and essays discussed in this article dismantle the authority of the medical profession and its neat and rational hierarchy of who knows about cancer and how it must be known by collating diverse affective expertise on diagnosis, treatment, and care. These affective testimonies—the fear of a cancer diagnosis, the dread of chemo and radiation, the anger of being treated like an object, the strangeness of becoming estranged from one’s body part, and the dire desire to be alone accompanied by the sad realisation of being alone—are the dirty margins of cancer that are more usually hidden away than frontally expressed.

Building on the contributions of Audre Lorde and Susan Sontag, we recognise Chandramathi, Nadimpalli, Semanthini Niranjana, Vasanta Duggirala, and Anita Ghai as adding new dimensions to a feminist epistemology that critiques dominant biomedical practice in India.Footnote ⁴⁷ Each of their works robustly criticises the operation of medical power that renders patients as passive objects. They turn to their disciplines in newer ways: Chandramathi uncovers a genre and begins to see her memoir as belonging to this genre; Vasanta, the rehabilitation researcher, realises the inherent hierarchy in treatment and therapy, learning something about her own profession. Semanthini Niranjana, a scholar of gender and space, sees the potential of thinking of patient narratives as related to social structures and urgently recognises the need to move personal patient narratives into a more sociological framework. Ghai jostles with the inaccessibility of healthcare systems and the problematic conflations of disability and illness both in the COVID-19 context and the cancer context. Nadimpalli, as a feminist bioethicist and public health researcher, learns of care collectives that go beyond medical institutions.

We began by exploring how cancer and academic life transact with each other—as medical humanities folk we are often compelled to respond to questions that regularly devalue the work that narratives do. Working on this paper, reading these texts, and listening and sharing with colleagues motivated us to begin to build a response to those often misplaced uninformed evaluations. The narratives we read and discussed in this paper have inaugurated an avenue we intend to explore further—how training in specific disciplines structures experiences of specific disease conditions enabling a mutual epistemic exchange between the disease and the discipline, as scholars in the social sciences and humanities have argued for decades that the situatedness of scientific and medical research must be explicated so that research in these disciplines does not remain confined to exclusive imperial silos, widening the gap between those who produce the knowledge and the subjects on whom the knowledge is applied, who are usually rendered passive and unagentive. Our paper, as an exercise, is breaking that epistemic divide to amplify the contributions made by women living with cancer to a better understanding of the illness experiences of the cluster of diseases. Cancer cannot be eradicated without insights from patients living with cancer educating medical advances. The paper also simultaneously repositions research in the humanities and social sciences to enhance its value in closing the interdisciplinary gap in cancer research.