A few months ago we published a blog post called “The First Person Experience in Illness” which expressed the importance of better understanding an ill person’s lived reality. A dysfunctioning lung impacts not just a person's breath but possibly her whole world. So attention to particular ways people relate to the world can help us all to better understand how illness transfigures someone's whole life.[1]

Often, illness raises philosophical questions about life, mind-body relationship, value and meaning of life, death and finitude, and human vulnerability. As a vehicle for such philosophical issues, the experience of illness deserves systematic exploration, and a beneficial tool for doing so is phenomenology philosophy.

In Phenomenology of Perception, philosopher Maurice Merleau-Ponty characterizes phenomenology as a study of essences. Emblematic of phenomenology is the phenomenological reduction. This is a drastic shift of perspective, setting aside the presupposed acceptance of a paradoxical world and letting it be.[2]

British philosopher Havi Carel articulates the value of phenomenology to narrow the gap between medical and existential understandings of illness by saying,

Phenomenology provides a set of concepts that are highly useful for a description of illness, without being prescriptive. As a descriptive method aimed at discerning acts of consciousness, phenomenology is uniquely suited to the exploration of the experience of illness. Phenomenology offers a step back from conventional understandings of illness and offers an opportunity for a genuinely unconstrained examination of illness...it is a distancing of oneself from habitual ways of understanding. Illness imposes such a distancing from everyday routines and meanings, and contains opportunity for questioning and rediscovery that can be enriched by philosophy.[3]

This framework helps us better understand the impacts of serious illness in someone’s life. “Illness is a pragmatic disruption of lived experience that forces reflection upon the ill person. It is not an academic, studied phenomenological reduction but a lived experience that motivates such a reduction. As such it is phenomenology in action.”[4] By shifting away from an assumed starting point of third person objectivity but beginning with first-person, subjective experience, space is opened for the inevitable hidden dimensions of lived reality.

Attention to the way, not just the fact

These type of depth approaches consider the way circumstances came about, not just describing the fact of the matter. When applied to understanding illness, it helps us attend to the patient-physician relationship—which inevitably affects a person’s illness experience. This interaction is profoundly impacted by a stark contrast between the attitude of the physician and the attitude of the ill person. This imbalance results from a rift in the ways of paying attention to the phenomenon at hand, the illness.

As medicine evolves, expedient treatment often overshadows in-depth attention toward the experiences of illness—creating gaps of understanding between ill people’s actual experiences and assumptions from others. Degrees of ineffability, medical biases, and social biases perpetuate these gaps. The verbal communicative gaps in the clinical space among patients, healthcare professionals (HCPs), and family caregivers involves the difficulty of sufficiently describing illness and suffering. HCP prejudices sometimes assume patient testimonies to be too emotional, subjective, or inarticulate for credibility. Family members of ill people might insist on medical capabilities to create miracles, at all cost, instead of the displeasure of seeing their beloved suffer. This often leads to further obscurity.

Phenomenology philosophy can be utilized for addressing these gaps by offering concepts and frameworks hospitable toward the entire style of life’s experiences. It can be used as a philosophical tool opening space for refined depth in describing people’s experiences of illness. From that, all the roles across the healing arch—patients, family caregivers, and HCPs—can benefit.

Ill people bear a particular wisdom about the condition they’re experiencing through the everyday adjustments like a three- to four-hour reserve of energy for activities, wheelchairs and crutches after surgery, or the necessity to keep a port dry when bathing or at the beach. Surely, the epistemic privilege afforded to the practitioner has its value; there is no denying the power of the biomedical knowledge that comes from years of medical school. However, as Havi Carel claims, “knowledge from a first-person experience of illness crucially interlaces with and illuminates the medical facts.” Adding first person accounts to the medical picture may make diagnostic, therapeutic, and empathetic contributions to healthcare provisions.[5]

Healthcare treatments are becoming more effective and there are more options for treatment than ever. Of course, a consequence is an imbalance of focus favoring the skilled applications of technologies that leaves the whole sick person unaddressed. Often a patient with symptoms associated with a certain disease is hastily classified. With insufficient attention to his whole lived experience, a gap arises between the vocational perspective of the healthcare professional and that of the patient.

Patients’ insights can help with diagnosis and treatment as well as enriching HCPs’ empathy and they can mitigate the feelings of alienation experienced by patients. No matter the amount of methods, data, and knowledge an HCP brings to the encounter—one thing the patient brings that the clinician can never do is the first-person experience of the disorder in question

In her book, Phenomenology of Illness, Carel expounds upon this phenomenological resource toolkit in a chapter co-authored with James Ian Kidd called “Epistemic Injustice in Healthcare.” This chapter intends to bring to the fore biases that source epistemic injustice, a term coined by philosopher Miranda Fricker denoting “a form of injustice that is uniquely epistemic, i.e. is done to the speaker in their capacity as knower.”[6] (Carel, 181)

So what this means is that honoring patient testimonies also involves acknowledging the other gap at hand: “collective hermeneutical impoverishment” or the hermeneutical gap. This involves an inadequacy or lack of concepts that a patient can use to fully articulate his illness experience. An example here could be the case where someone is trying to communicate sexual harassment in a culture where the concept does not exist. Degrees of ineffability involved with illness and suffering can exacerbate this gap. Additionally, stigma can contribute here as well. A patient may censor her report in attempt to show up in a favorable light amidst certain internalized stereotypes.[7]

This gap in understanding each other’s perspective can be enigmatic. Ultimately, phenomenology and existentialism are approaches well-suited to supplement medical systems constrained by rigidities accumulated through decades of tradition. They allow us to respond with finesse and plasticity, flexible to the flowing present moment.

By paying attention to a particular aspect of the experience at a time, a person’s account can take on more depth and substance. Some possible ways to refine that reflection are by focusing on these general features of illness: removal from routine and habitual way of living, loss of control, different ways of space and time, and transformed social life. These are inspired by robust models of illness from philosopher S.K. Toombs in “The Meaning of Illness: A Phenomenological Approach to the Patient-Physician Relationship” and Havi Carel in Phenomenology of Illness. What’s common to these and of phenomenology at large are avenues through which we can make sense of the world, necessary conditions for the world to make any sense whatsoever.

All in all, distancing from our presuppositions helps us all think about illness and medicine with more clarity. This can create space for possibility.

“In examining disease, we gain wisdom about anatomy and physiology and biology. In examining the person with disease, we gain wisdom about life.”
― Oliver W. Sacks

[1] Carel, “Phenomenology as a Resource for Patients,” 13.

[2] Merleau-Ponty, Phenomenology of Perception, 44.

[3] Carel, Phenomenology of Illness, 181.

[4] Carel, “Phenomenology as a Resource for Patients,” 113.

[5] Carel, Phenomenology of Illness, 198.

[6] Carel, 181.

[7] Carel, 190.