Transitions in Chronic Illness

Source: Katie Willard Virant

If you have children returning to school this month, you’re aware that they (and your whole family) are in a state of transition. They’re moving from long, lazy summer days back to early mornings, classrooms, and homework. Maybe they (and you) are anxious, tired, cranky, and overwhelmed. You know it’ll feel better when you’re used to the new routine, but — for now — nothing feels quite right. So it goes, when you’re living in a transitional period.

Transitional stages in chronic illness

A transition is “a process of changing from one state to another (Shaul, 1997).” It can encompass “change to or within an individual, the environment, or both. (Shaul, 1997).” Living with chronic illness is living with constant transition — from well to ill and back again several times over.

Researchers have identified four major transitional stages of chronic illness (Shaul, 1997). The first transition is awareness of symptoms. Sometimes this happens acutely, making it quite apparent that something is not right in the body. Other times, it happens gradually, with symptoms denied and minimized until they become too extreme to ignore.

The next transitional stage is getting care. People engage with the medical system during this stage, seeking assessment, diagnosis, and a treatment plan. Confusion, frustration, overwhelm, and fear are common emotions during this stage.

Once care is secured, the next transitional phase is learning to live with the illness. Learning to live with the illness encompasses change in all facets of daily existence, including family, work, social life, and identity (Soderberg & Lundman, 2010). This stage consists of trial and error in the service of creating a life that works within the new constraints imposed by illness.

The final transitional phase of chronic illness is mastery. At this point, the individual is adept at managing illness in the context of a life that feels meaningful.

Here’s the kicker, though: Mastery is a phase that ends because chronic illness inevitably returns. Medications stop working; old symptoms return; new symptoms arise. We’re back to the beginning and starting the cycle anew: noticing something has changed, seeking care, learning to live with the new iteration of our illness, and working toward mastery.

Why this framework matters

Theories are important because they put words to what we are experiencing. We can make better sense of big emotions when we understand them through the lens of a framework. Understanding chronic illness as a series of transitions designed to move us toward stability helps us bear the stress of those transitions better. Just as a student heading back to school might say, “Of course September feels difficult for me — it’s a transition,” a person living with illness can remember that stress runs higher in times of illness transitions.

Furthermore, theoretical frameworks provide a “map” of experience. Locating ourselves on the map of chronic illness' transitional stages allows us to see where we’ve been, where we are, and where we’re going. It also helps us accept the inevitability of change.

Transitions are discrete lengths of time, bookended by periods of relative stability. Remember this when you are coping with the disorienting stress of a transitional period. Transitions are part of the cycle of chronic illness and, indeed, part of the cycle of life itself. Sometimes we are in transition; sometimes we are in relative equilibrium. Transition can feel so overwhelming that we forget that it is a phase that ends, bringing with it new stability. Theory helps us to hold onto this comforting fact.

Thinking about chronic illness transitions

Think about your own chronic illness journey. How does it map onto the transitions framework described above? Which stage are you currently living in? What emotions arise as you personalize the theory? Does personalizing the theory feel useful to you?