Mindset and Chronic Illness

Source: Katie Willard Virant

The term "mindset” encompasses the assumptions and beliefs that help us make sense of our experiences (Yeager & Dweck, 2020; Zeidman et al., 2022). You may be familiar with the concept of “growth mindset,” developed by psychologist Carol Dweck in the context of education. Dweck found that students who believed that intelligence could be developed (a “growth mindset”) outperformed students who thought that intelligence was fixed and unchangeable (a “fixed mindset”). Thus, mindset plays an important role in outcomes.

Illness Mindsets

Researchers have found that mindset affects outcomes in many contexts, including illness (Zeidman et al., 2022). They’ve identified three common mindsets found in people living with illness: the catastrophe mindset, the management mindset, and the opportunity mindset (Zeidman et al., 2022).

People with a “catastrophe mindset" are certain that illness is a catastrophe. They believe that their circumstances will never improve, that they don’t have any power to change their situation, and that their suffering is unbearable.

People with a “management mindset” believe that illness symptoms ebb and flow. They assume that there are good and bad days, and that they have agency to affect their circumstances. They believe that suffering is part of being human and that they have the fortitude to bear it.

People with an “opportunity mindset” see illness as a means of empowerment. They can practice acceptance, agency, courage, and wisdom in the face of suffering, developing and strengthening qualities they value. They also can use their suffering to connect deeply with others who suffer.

Working With Our Illness Mindsets

We fluctuate among all three illness mindsets. Certainly, there are times when illness feels like a catastrophe. Bad flares, hospitalizations, and unrelenting pain are just a few situations that can feel catastrophic. Likewise, there are times when illness seems manageable—when our medication is working well, when we are in relative remission, or when we have a pain-free day. There are days, too, when we believe that illness is an opportunity—when we take pride in the person we are becoming as we live with suffering.

Think about what it feels like for you to be in each mindset. Most of us would agree that a catastrophe mindset creates worry, panic, helplessness, and hopelessness. In fact, a catastrophe mindset is often so painful that it compounds our suffering from physical illness. How can we manage the catastrophe mindset when we find ourselves in it?

First, we can ask ourselves this question: “Is this a catastrophe or does it just feel like one?” A catastrophe is an experience where we are in imminent danger of grave harm. If you’re experiencing an actual catastrophe, then seek help immediately. If instead you determine that you’re not in immediate danger but you feel as if you are, ask yourself why this might be so. Sometimes it’s because you’re fast-forwarding into the future, telling yourself “what if” stories about what may or may not happen. One common example is, “This feels like a catastrophe because I’m in a stubborn flare. What if it never goes away?” Another explanation for “this feels like a catastrophe even though I’m not in immediate danger” is anger, grief, or exhaustion at one’s present circumstances. These valid feelings are important to acknowledge, so feel them, but do not let your mind identify them as catastrophe. This is not to diminish these experiences but rather to properly identify them as difficult emotions that need to be worked through and are not going to kill you.

Once you’ve analyzed why you’re in a catastrophe mindset, ask yourself if there’s anything you can do to nudge yourself toward a management or opportunity mindset. Don’t attempt to completely eliminate your catastrophe mindset; just see if you can turn it down a couple of degrees. Call a friend, journal about your feelings, do some gentle movement, or listen to music. Try out one or more of the action steps that typically help you to feel better. Even the act of trying pushes back against the catastrophe mindset by saying, “I have some agency over my circumstances.”

Finally, get accustomed to riding the waves in and out of the three illness mindsets. Instead of automatically fearing the shifts, be curious about them. Learn through practice that you can navigate these waves. Remember that just like surfing ocean waves, surfing emotional waves is a learned skill. Therapy is a great place to get some coaching.

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Cognitive Distortions Experienced in Chronic Illness

Conclusion

Returning to Dweck’s concept of growth mindset, it’s optimal to cultivate a growth mindset when working with chronic illness emotional states. A catastrophe mindset doesn't have to be a fixed state; rather, it’s a mindset that can be worked with and altered. That’s not to say that it’s easy, but the belief that change is possible is an important foundation for actual change.