The Shifting Perspectives Model of Chronic Illness

Source: Katie Willard Virant

“You don’t LOOK sick.” “You look terrible. What’s wrong with you?” “You can’t be that sick if you’re able to work.” “You’re going to exacerbate your illness if you keep working so hard.” “Why are you requesting accommodation when you’re able-bodied?” “Why didn’t you ask for help?”

Is it any wonder that people who live with chronic illness can struggle with identity? We baffle people around us (both strangers and friends), and we often baffle ourselves. People want us to pick a label–sick or well–and stick with it. However, it turns out that our emotional well-being is strengthened when we resist limiting our identity and embrace both the sickness and wellness that comprise our experience.

The Shifting Perspectives Model Defined

Living with chronic illness contains elements of both illness and wellness (Paterson, 2001). The chronic illness experience is “a process of continually shifting between the perspectives of wellness in the foreground and illness in the foreground to make sense of one’s world at the time” (Paterson, 2003).

A perspective of illness in the foreground involves a focus on the illness. We likely have this perspective when our symptoms are flaring, when we’re at a medical appointment, or facing limitations due to illness. When illness is in the foreground, we may be more aware of feeling anxious, sad, and/or angry.

A wellness perspective in the foreground is a state in which we can focus on aspects of identity that are outside of or transcend illness. We may have this perspective when we are feeling relatively well or engaged in an activity that takes our mind off of our symptoms. When wellness is in the foreground, we may be more aware of a feeling of positivity and hope.

These states shift continuously, in large and small ways. During a flare, the illness perspective is in the foreground. It recedes when symptoms decrease, allowing the wellness perspective to be highlighted. Even on a relatively benign day, we can observe movement in the states. For example, wellness may be in the foreground when we clock in at work and tackle a meaningful project. As we pick up a prescription from the drugstore a few hours later, illness may shift to the foreground. When a friend texts us a funny meme as we leave the pharmacy, illness recedes, and wellness is again foregrounded. Recognizing and understanding these shifts can help us tend to the emotions they evoke.

The Importance of Acknowledging Both Wellness and Illness

Both the illness and wellness perspectives serve important functions. When illness is in the foreground, we are acknowledging that our illness requires attention and care. We modify our lives accordingly to attend to our bodies. When wellness is in the foreground, we acknowledge that we are more than our disease as we enjoy aspects of our identity outside of our illness.

Notice that this shifting perspectives model uses foreground and background language instead of an either/or conceptualization. Ideally, then, the chronically ill person can keep hold of both health and illness perspectives. When the illness perspective is in the foreground, the wellness perspective is in the background rather than disappearing completely. Similarly, when the wellness perspective is in the foreground, the illness perspective remains without disappearing.

This ability to hold on to the opposing state is important. When illness is foregrounded, keeping hold of wellness in the background is important in maintaining optimism. When wellness is foregrounded, keeping hold of illness in the background is important in maintaining a level of care for ourselves conducive to staying healthy. We forget we are ill at our peril; we forget we are well at our peril. We try to hold both identities as we flexibly shift between illness and wellness in the foreground/background.

Societal Pushback on the Shifting Perspectives Model

We like binaries in our society: Things are black or white; people are sick or well. People living with chronic illness know firsthand that ever-changing shades of gray accurately describe our experience. The pressure we face to identify as either sick or well can create an uncomfortable feeling of not being fully seen.

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Using the shifting state's model, perhaps we can feel more comfortable claiming both sick and well identities. We may request an accommodation due to illness, but that doesn’t mean we need to be defined (or define ourselves) as invalid. We may have a burst of energy one day, enabling us to take on additional activities, but that doesn’t mean we will perform the same level of activities tomorrow. Seeing ourselves as sick and well enables us to live as whole people, affected but not entirely defined by chronic illness.

In what ways does the Shifting States Perspective accurately reflect your experience? What does the illness perspective feel like for you? What does the wellness perspective feel like? Are you able to hold on to the background perspective even when the opposite perspective is foregrounded? How might it be helpful to see yourself as both sick and well consciously?