Chronic Illness as a Biographical Disruption

Source: Katie Willard Virant

Sociologist Michael Bury first described chronic illness as a “biographical disruption” in the 1980s. This description and the theory Bury developed around it continue to be relevant in understanding chronic illness experiences today. I recently re-read Bury’s seminal paper and was struck by how the COVID pandemic both illustrates his framework and also provides a way to facilitate understanding of chronic illness. Bury’s work highlights three facets of the chronic illness experience: illness onset, the recognition that illness is not going away, and the mobilization of resources in the face of illness.

The onset of chronic illness

Bury defines biographical disruption as an experience “where the structures of everyday life and the forms of knowledge which underpin them are disrupted.” Certainly, the onset of illness disrupts the norm in a manner that feels surprising, threatening, and far-reaching. Ways of living that are so ingrained as to be reflexive suddenly are impossible. We are shoved into new, unprecedented territory.

As a way of clarifying this for people who have not experienced chronic illness, I’d like to remind you that you have lived through a version of what Bury is describing. Remember when the world shut down due to COVID in March 2020? You likely felt shock, disbelief, and vulnerability. You’d probably never thought about living in a world where you couldn’t go to work, travel, see friends, or share air with strangers. It was beyond anything we'd imagined to experience. Were you numb? Frightened? Angry? Confused? I’m guessing you felt a multitude of emotions in the wake of this enormous shift in circumstances.

For many, the emotions felt at the onset of chronic illness are similar to those we collectively experienced in response to COVID. Bury describes the onset of illness as “a situation of great uncertainty, where [affected persons] may have little or no idea what is happening to them.” What had been known and relied upon so thoroughly that it was not even consciously thought about disappears, leaving a vacuum in its place.

The recognition that illness is here to stay

Bury describes the continuation of chronic illness as involving an “uneasy balance” between seeing disease as an outside force and feeling its invasion in all aspects of life. That is, we are used to thinking of our “self” as existing outside of the forces at play around us. We want to believe that our identity stands separate from our hardships; we like to say that we are not the challenges we face. However, biographical disruptions like chronic illness blur the line between self and circumstances. We find that our new circumstances do affect selfhood. Our actions, thoughts, emotions, and beliefs change radically with biographical disruptions like chronic illness.

Again, addressing people who do not live with chronic illness: What do you remember about your emotional experience as it became clear that COVID wasn’t going anywhere? For many of us, despair and fatigue set in. What had seemed doable in the short term became tiresome. We did not know how much more we could take, and yet we had no choice. What was different about your pre-COVID “self” and the self you were during those months of quarantine when no end was in sight? Did you feel yourself changing? Did you wonder if you ever again would be your “old self”?

The mobilization of resources in response to illness

Bury notes that people mobilize resources in response to biographical disruptions like chronic illness. Resources such as finances and social support are used to fill in the gaps created by illness. During the COVID pandemic, people were differently situated depending on the extent of their resources. Some people decamped to second houses, while others worried about paying their mortgage or rent on one home. Those who lived in stable family configurations were less isolated than those who lived alone. There was a recognition that we were living through the same storm but facing it in very different boats.

Similarly, people living with chronic illness vary in the resources they have available to them. Illness bankrupts some people; others with more financial capital are better able to access healthcare treatment. Some have strong social support networks; others do not. The existence and extent of resources have a real bearing on how a person faces biographical disruptions like chronic illness.

What resources helped you during COVID? What resources do you wish you'd had access to? If you live with chronic illness, what resources do you possess and what resources do you lack?

Why theory matters

We are living in a time in which it feels increasingly difficult to hear and understand each other. Theoretical frameworks like Bury’s biographical disruption offer a way of describing complex processes like the emotional experience of living with chronic illness. Inviting people who do not live with chronic illness to imagine this experience, and to empathize based on their own lived experience during the COVID pandemic, enables deeper communication and connection.