Chronic Illness and Grief

Katie Willard Virant

When we talk about chronic illness, we are talking about the loss of the healthy body. This loss leads to myriad challenges: changed relationships changed career possibilities, changed hobbies, changed identity. Grief–the way we respond to these challenges–is a normal reaction to loss. This column explores the “dual process model of grief” (DPM) developed by Margaret Stoebe and Henk Schut (1999). Stoebe and Scout’s model captures the grieving process's complication, non-linearity, and messiness.

Loss-Oriented Stressors and Restoration-Oriented Stressors

The DPM identifies two distinct categories of grief-related stressors. Each category of stressors requires attention as part of the grieving process.

Loss-oriented stressors are focused on the loss itself. In chronic illness, loss-oriented stressors include the changed body and its symptoms. Living with chronic illness means taking in and processing the experience of changed bodily functioning, physical appearance, and energy levels. The life one might have led as a healthy person is gone forever; in its place is a different life shaped by the absence of optimal health.

Restoration-oriented stressors are secondary sources of stress emanating from the primary loss of health. Examples include the need to manage one’s life to accommodate the chronic illness. How will illness affect the ability to work? To play? To relate to others? How will daily life change as a result of illness?

Grappling with loss-oriented stressors involves feeling the deep sorrow that one’s life is irrevocably shattered. The yearning for things to return to a pre-loss state, the belief that one is being asked to bear the unbearable, and anger at the unfairness of living with chronic illness–all are powerful emotions we experience as we struggle with the loss of health. Coping with these stressors involves facing them–living with and through the deep emotions evoked by loss.

Grappling with restoration-oriented stressors involves putting together a new life post-loss. Illness derails many aspects of life, including career plans, relationship roles, and activities of daily living. Coping with these stressors involves making new plans for a new life changed by illness.

Stoebe and Schut note that it’s essential to focus on both categories of stressors as part of grief. If one only focuses on the loss-oriented aspect of grief, they remain stuck in the past. If one only focuses on the restoration-oriented aspect of grief, they cut off the past without truly finding a way to integrate it with their present identity. For “good grief” to occur, both loss-oriented and restoration-oriented stressors must be attended to.

Oscillation

The DPM posits that grief involves a moving back and forth between coping with loss-oriented and restoration-oriented stressors. This is dynamic and complex and can involve moment-by-moment oscillations between the two stressors. At one moment, a grieving person could look at her changed body in the mirror, tearing up over an appearance-related change. In the next moment, she could brainstorm ways to manage this change–finding clothes that will flatter her new body, for example.

Oscillation also occurs between active grieving and taking a break from grief. Stoebe and Schut are adamant that “it is arduous and exhausting to grieve; respite at times is recuperative.” In their theoretical framework, it’s healthy to put grief down when the burden becomes too heavy. Giving oneself permission to withdraw from active grieving is a necessary part of good grief.

Strengths of the Dual Process Model of Grief

The DPM conceptualizes grief as an ongoing journey rather than a list of train stations we must stop at before arriving at a final destination. The DPM normalizes grief’s dynamic fluidity. Sometimes, loss is foregrounded; sometimes, restoration is foregrounded; and sometimes, rest and respite are foregrounded. The DPM allows us to have all of our grieving stories. We can say, “I am forever changed by and sad about living with chronic illness.” We can also say, “I am building a new life for myself that accommodates chronic illness.” We can also say, “There are facets of my identity that have nothing to do with chronic illness.” The DPM makes room for the rich multiplicity of our grieving experience.

Grief Process Exercise

Check in on your own chronic illness grief process by thinking about the following questions:

• How am I dealing with loss-oriented stressors caused by my chronic illness? What feelings come up for me? Are there particular events that trigger those feelings? What do I tend to do when I feel those feelings (e.g., lean into them, distract, become overwhelmed)?
• How am I dealing with restoration-oriented stressors caused by my chronic illness? What feelings come up for me? What events trigger those feelings? What do I tend to do when I feel those feelings?
• Do I spend more time dealing with loss-oriented stressors or dealing with restoration-oriented stressors? Am I avoiding one category or the other? For example, am I preoccupied with loss such that I haven’t been able to rebuild my life? Or am I preoccupied with rebuilding my life such that I haven’t really felt the sadness of the loss of optimal health?
• Do I allow myself breaks from grief? What do those breaks look like for me? Do they feel restorative?

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If your grieving process feels unbalanced, please consider speaking to a therapist. "Good grief" is an important part of living with chronic illness.

To find a therapist, visit the Psychology Today Therapy Directory.