The Costume of Health in Chronic Illness
Many of us who live with chronic illness engage all year round with a costume that we take on and off: the costume of wellness. This post addresses what that costume looks like, the social pressure we may feel to wear it, and ways to be mindful of when and how we don it.
The Costume of Wellness
The visual accoutrements of the costume of wellness include makeup and clothing that mask the effects of illness. Behavioral manifestations can include denying the impact of illness in words (“I’m fine!”), in silence (pretending we are not in pain), and in actions (not slowing down or limiting activity, even when we endanger our health).
Sometimes we wear the costume of wellness because it helps us feel better about ourselves. Sometimes we wear it because we prefer our privacy. And sometimes we wear it because social pressure dictates that we must, and we feel we have no choice but to comply.
The Pressure to Appear Well
Many of my chronically ill clients fear exasperating family and friends when they have to limit activities due to illness. Some also are fearful of complaining too much and “being a downer” by bringing up their illnesses. They’ve internalized the message that they will lose relationships if they dare show up without the costume of wellness.
Psychoanalyst Judith Alpert theorizes that our culture is terrified of death, illness, and vulnerability. Thus, “[t]hose who have contact with the chronically ill . . . do not want to be reminded of vulnerability and ultimate demise. In turn, the demand placed on the chronically ill is to control, hide, and overcome the chronic illness.” (Alpert, 2012).
We who live with chronic illness feel this fear in our interactions with family, friends, and the larger public. We may see friends drift away, unable to manage their own uncomfortable feelings in the face of our suffering. We may have disappointing experiences when we reveal our illness selves, receiving the message that this is something that cannot be spoken about. And so we learn, experientially, that we’d better not remove the costume of wellness.
The Pressure to Manage Well
Inevitably, there are the times when we can’t pass as well — when we’re hospitalized or incapacitated in ways that we can’t hide. We may not be expected to wear the costume of wellness during these situations, but we likely are expected to wear the costume of “the heroic sick person.” The heroic sick person never complains, is able to joke through her pain, and comforts the well with her positive attitude. There’s a lot of social approval for this type of heroism. As Alpert (2012) notes, “The person who smiles and jokes while in obvious physical misery is honored by all.”
Little Women’s sickly Beth is the prototype of the heroic sick person. Angelic in looks and character, she meets her illness and ultimately death with acceptance, bravery, and good humor. There’s no room in this sanitized depiction of illness for terror, bitterness, ugliness, and bodily fluids. There’s no room for being human. There’s no room for truly being sick. (Machado, 2019).
Wearing Wellness Mindfully
There are times that we make the decision to appear healthier than we feel. We may have discovered that it’s good for our mental state to act as if we are more robust than we feel. We may be discerning in determining not to share the vulnerable details of our illness experience with people who would not hold that information safely. The choices of how to define ourselves—both internally and relationally—are ours.
It’s important to be mindful, though, of how much our decisions to mask our illness identity are driven by our perceptions of social pressure. Do we fear abandonment if we appear ill? Do we fear disapproval and distance from those we love if we fail to live up an ideal of wellness? If so, putting on our wellness costume can have negative effects on our mood. Research shows that when people perceive that others think they should feel happy, and not sad, it leads them to feel sad more frequently and intensely (Bastian, et al., 2012). Putting on a smile may NOT be in our best interest, especially if we do so because we fear relational ramifications for being authentic.
How to Wear Our Costumes
Each year, I look forward to interacting with the trick-or-treaters who come to my door. They are delighted with themselves. The five-year-old Superman half-believes he can fly. The seven-year-old movie star feels beautiful enough to walk the red carpet. I conspire with them in their put-on identities, admiring the strength of the pint-sized Hulk and shrinking with fear from the ghost wrapped in an old sheet. We revel together in the playfulness of the holiday and in the thrill of power we feel when we mindfully choose how to present our identity.
It would be crushing to these children to fail to believe them, to say, “You’re not a princess; you’re only the child next door.” But it also would be frightening to insist that the presentation is reality, that the skeleton has negated the little boy inside the costume. Indeed, sometimes children will pull up their masks as if to reassure themselves and say, “I’m not really a monster; I’m just me!”
Can we wear our costumes of wellness as children wear their Halloween costumes? Donning them can be powerful, playful, and resilient. But we don’t want to wear them so rigidly that others can no longer identify us — or so rigidly that we can no longer identify ourselves.
Alpert, J.L. (2012). Loss of humanness: The ultimate trauma. American Journal of Psychoanalysis, 72, 118-138.
Bastian B., Kuppens P., Hornsey M. J., Park J., Koval P., Uchida Y. (2012). Feeling bad about being sad: the role of social expectancies in amplifying negative mood. Emotion, 12, 69–80.
Machado, C.M. (2019). The real tragedy of Beth March. https://www.theparisreview.org/blog/2019/08/29/the-real-tragedy-of-beth-march/