The Invisible Work of Being a Patient: Anthropology and Medical Care

Navigating the taskscape of illness beyond clinical encounters

In my previous post, I explored how a cancer diagnosis creates a crisis of correspondence – an abrupt shift that fundamentally reshapes one's understanding of their body, future, and place in the world. This rupture, while profoundly personal, unfolds within complex medical systems and protocols that often prioritise technical precision while overlooking the patient's lived reality. Today, I want to examine this overlooked dimension of illness – the invisible work that patients perform as they navigate what anthropologist Tim Ingold calls the 'taskscape' of medical care.

The Taskscape of Cancer Care

Imagine you're lying on a hospital bed, arms stretched above your head in an uncomfortable position while a various radiotherapy technicians mark your body using a sharpie and a ruler. They advise that you shouldn’t attempt to intentionally scrub the marks off in the shower - they will use them as a starting point the next day¹. And because radiation therapy takes weeks you end up wearing the evidence of the treatment long after it has finished. But the sharpie marks eventually fade and you forget the sting of the cold metal ruler on your flesh. While the marks may seem arbitrary to you, what they represent is the precise coordinates for treatment. The technicians position you meticulously, take x-rays using your ribs and collarbones as internal landmarks, to find congruence with their externally scribed markings. Then they leave the room and treatment begins. You feel nothing, were it not for the sounds of the machine you could easily imagine that nothing is occuring² – yet this apparent absence of sensation belies the profound transformation occurring within your body.

This scene, drawn from my own experience with radiation therapy, exemplifies what anthropologist Tim Ingold terms a ‘taskscape’ – a landscape defined by activity rather than mere physical features. In traditional landscapes, natural features like hills and rivers create the terrain. In a taskscape, it is human activities that shape the environment. The body becomes a taskscape of medical care, filled with activities with the goal of transformation.

What's particularly striking about the taskscape of cancer care is how it renders patients simultaneously intensely present (as bodies requiring precise positioning) and strangely absent (in their lived, feeling dimension). Radiation therapy is an arduous process - my own treatment was over 24 consecutive days (excluding planning and post and mid treatment review appointments) - my presence was both ancillary and a barrier to the process. Oh, sure, my body needed to be there but I didn’t.

For my part there was very little agency involved - not to imply that I didn’t consent to the treatment - but rather that radiation therapy was not a typical doctor/patient dialogue where options are discussed and tests or treatments are theoretical. Showing up for radiation therapy is more like dropping your car off for a service. Sure, I make all the right gestures and sounds to indicate my understanding of what maintenance is required but that is artifice to conceal my ignorance and hope that the act is convincing enough to prevent getting ripped off³. I put on a similar performance when I asked a technician measuring and adjusting me prior to treatment to explain what was actually occurring. The technician gave me what they might have assumed was a simplified explanation of the different types of radiation as just described the state of my spark plugs⁴.

This paradox of being both simultaneously essential and ancillary to treatment echoes what Thompson (2007:341) describes as ‘living within a body that feels “well” a majority of the time’. I show up for each appointment, some stuff happens, I leave with only my sharpie marks as evidence anything occured⁵.

The Invisible Labour Beyond Clinical Encounters

The medical system privileges what Thompson calls ‘the serious stuff’ – surgery, chemotherapy, radiation – while overlooking the continuous work of living with and beyond illness. As Unruh and Pratt (2008:42) note, ‘the majority of cancer care happens in the spaces between clinical encounters’.

This invisible work takes multiple forms:

• Information management: During my treatment, I became an ‘information courier’, shuttling medical information between specialists who rarely communicated directly with each other. I would bounce between different doctors who required a full recounting of my medical history to date, effectively becoming the primary coordinator of my own care.

• Emotional labour: Managing others’ reactions to illness represents substantial hidden work. As Bell (2014:59) observes, patients often find themselves comforting the very people meant to be supporting them, creating what she calls ‘the burden of brightness’ – the expectation to maintain optimism despite personal struggles.

• Navigational work: Finding one's way through fragmented healthcare systems requires considerable effort, particularly when feeling unwell. This includes scheduling appointments, arranging transportation, managing paperwork, and advocating for appropriate care – often while experiencing treatment side effects or disease symptoms.

• Sense-making work: Perhaps most challenging is the cognitive burden of making medical decisions with incomplete information while simultaneously processing the emotional impact of diagnosis. As one participant in Unruh and Pratt's study noted, cancer patients become ‘business partner[s] in the most important business in my life, staying alive’ (2008:41).

The invisibility of this work reflects broader patterns in how medical care is structured. The dominant discourse around illness often focuses on discrete medical interventions while overlooking the continuous labour patients perform to maintain continuity of care. This oversight has practical consequences: when the work patients do remains invisible, it becomes harder to design systems and technologies to support it.

Anthropology at the Bedside: Changes in Medical Practice

Anthropological insights have gradually infiltrated medical practice, leading to meaningful changes in how care is delivered. Ethnographic approaches have been particularly valuable in illuminating the patient experience beyond biomedical frameworks.

Consider the evolution of cancer survivorship care. Early medical approaches assumed that once active treatment ended, patients could simply return to normal life⁶. However, anthropological research by researchers like Thompson revealed that cancer creates a kind of sustained trauma that is accentuated by experiences of suffering in connection to loss, extending well beyond the completion of medical protocols.

This understanding has led to the development of survivorship care plans, formalsed transitions from active treatment to follow-up care, and increased attention to the psychosocial dimensions of recovery. As Williams and Jeanetta (2016:638) note, patients need ‘support beyond post-treatment to help deal with ongoing fear, and the transition to a more normal life’.

Similarly, anthropological observations about the burden of navigating fragmented care systems have contributed to the emergence of patient navigation programs. These programs, first developed by Dr. Harold Freeman in Harlem Hospital, provide advocates who help patients traverse complex healthcare systems, particularly those from marginalised communities with limited resources.

Re-embodying Medical Care

Perhaps the most significant contribution of anthropological perspectives to medical practice has been the effort to re-embody care – to reinstate the person at the center of treatment. This reflects what Ingold might call biomedicine with the people in, echoing his description of anthropology as ‘“philosophy” with the people in’ (2014:393).

The growing emphasis on patient-reported outcomes in clinical trials, the inclusion of patient representatives on hospital committees, and the rise of narrative medicine all reflect this anthropologically-informed shift. These approaches acknowledge that technical precision alone cannot address the full complexity of illness.

My own experience with radiation therapy illustrates this tension. While the radiation oncologists meticulously mapped my body's surface, the deeper transformations – physical, emotional, social – required different kinds of attention and support. As Thompson notes, ‘two people with the same disease most certainly do not have the same illness experience’ (2007:342).

Correspondence in Medical Encounters

Returning to Ingold's theoretical framework, we might understand the ideal medical encounter through his concept of correspondence – an open-ended, dialogical process between patient and provider. Rather than treating patients as passive recipients of medical intervention, this perspective suggests the importance of knowing from the inside and understanding illness through lived experience.

This shift from translucence to correspondence – from seeing through to seeing with – offers particularly rich possibilities for reimagining medical care. It suggests that healing involves not just treating disease but engaging with the whole person and their changed relationship to the world.

When my surgeon marked incision sites during surgical planning, those lines were more than mere surgical guides; they became ‘demarcations between past and future selves’ (Thompson, 2007:340). Recognising this dual reality – the technical and the lived, the medical and the personal – is essential to humane care.

Looking Ahead

In my final post in this series, I'll explore how anthropological perspectives might inform not just medical practice but patient experience itself. How might concepts like correspondence, lines, and material anthropology help us navigate illness differently? What alternative richer metaphors might emerge beyond the dominant language of “battling” disease?

The challenge, as in all anthropological enquiry, is not to impose a ready-made framework but to follow the lines of becoming that emerge from lived experience. Or as Ingold (2016:3) reminds us, ‘life is lived along paths, not just in places’, and illness represents a significant redirection of those paths – one that deserves our fullest attention.

References

Bell K (2014) ‘The breast-cancer-ization of cancer survivorship: Implications for experiences of the disease’, Social Science & Medicine, 110:56–63. https://doi.org.10.1016/j.socscimed.2014.03.031

Ingold T (2014) ‘That's enough about ethnography!’, HAU: Journal of Ethnographic Theory, 4(1):383–395. https://doi.org.10.14318/hau4.1.021

Ingold T (2016) Lines: A Brief History, Taylor & Francis Group, London.

Thompson K (2007) ‘Liminality as a Descriptor for the Cancer Experience’, Illness, Crisis & Loss, 15(4):333–351. https://doi.org.10.2190/IL.15.4.d

Unruh KT and Pratt W (2008) ‘The Invisible Work of Being a Patient and Implications for Health Care’, Ethnographic Praxis in Industry Conference Proceedings, 2008(1):40–50. https://doi.org.10.1111/j.1559-8918.2008.tb00093.x

Williams F and Jeanetta SC (2016) ‘Lived experiences of breast cancer survivors after diagnosis, treatment and beyond: qualitative study’, Health Expectations, 19(3):631–642. https://doi.org.10.1111/hex.12372

1. And the following day, and the day after that etc.

2. Thinking back to this time, I wonder if these sounds are “necessary” to the operation of the machine or if they are added for the benefit of the people both operating and being treated by it. Like adding engine noise to electric vehicles.

3. As an autistic woman I doubt I am pulling it off as gracefully as I think.

4. I have the entirety of the worlds knowledge at my fingertips and I still have never looked up what a spark plug is and I am not about to start now.

5. Until my skin begins to burn which actually wasn’t until the very end of treatment with it peaking a few weeks after.

6. Whatever that was.