We have previously introduced the concept of a social model of illness, which centers a patient’s experience of suffering as the focus of care rather than solely a pathological agent. In the case of chronic illness, such a phenomenological model demonstrates a uniquely valuable perspective as both a method of meaning-making and of goal-setting. 

Goal Setting

Chronic illnesses are, by definition, incurable. The quest for a cure can be a dangerous myth that distracts from the alleviation of current suffering, and often exacerbates frustration and resentment when a magic bullet fails to appear. As mentioned previously, illness is an interruption of our normal functioning, wherein both our body and our social worlds are splintered. Eating, speaking, and sleeping may be made hard or impossible, or require special accommodations, each with its own psychic effects when experienced in chronicity. To the extent possible, then, treatment should aim to reduce the severity of these disruptions–not promising to magically heal the disease, but helping mend these breaks in our regular worlds. 

If only one or neither of the patient and practitioner shares in this understanding, there may be further conflict between each of their explanatory models: What is the goal of treatment? What constitutes success? What parts of the patient’s suffering are most important to address and alleviate? Unlike curable ailments, where the goal is tacitly understood by both as the restoration to (perfect) health, treating chronic illness requires a more direct reconciliation between patient and provider.

Meaning Making

Further, rather than the linear pursuit of “recovery,” the treatment of chronic illness is itself iterative and perpetual, characterized by continuous interventions and alterations of sensation. As such, the monitoring of symptoms and experiences becomes a pursuit of interpretation. The healthcare provider, certainly, looks to interrogate meaning as it suggests advancement or deterioration, but so, too, does the sick person. The danger, then, lies in the over-pathologization of the body; appropriating it, reducing it to a set of extra-sensory reference points, and reconstituting it as a medically “manageable” object. In this hyper-medicalized way, there arise new definitions of what illness means, and thus new sources of authority. 

Because chronic illnesses are incurable–and sometimes, as with IBS or fibromyalgia, lacking in definitive cause–there lies a fundamental uncertainty underneath the technological bravado of medical monitoring. A phenomenological model encourages us to answer this ambivalence with the sick body’s most authoritative agent: the sick person themself. Diagnosis can provide an interpretive model for the sick person, offering a vantage point through which to understand and emplot one’s experience, but the role of treatment should be to aid in reconstituting a sense of self, not dictate meaning on its behalf. 

When the living world becomes characterized by intervention (be it dialysis for someone in renal failure, or daily immunosuppressants for a transplant recipient), the sick role imposes itself as omnipresent, and one’s self is interpreted primarily through its compromised statuses. Though treatment of chronic illness cannot promise to restore total routine normalcy, its aim to lessen the burden of the illness experience is simultaneously functional and semiotic, reducing both the mechanical and psychic strain of sickness.