Very Different Responses to a Condition as an Identity

FacesMedical terms can carry a lot of baggage. Leprosy, cancer, diabetes, autism, and obesity are just a few examples. What they all have in common is that they describe conditions that can cause a lot of trouble, but either don’t or didn’t have an easy resolution. So to greater or lesser degrees, people attached stigma to them. In turn, that stigma has a profound impact on a person’s health, sometimes in a way that far exceeds the effects of the condition itself. The condition can easily become part of a person’s identity.

Personal responses to this can be wildly different.

The Illness Identity

Liesbet Van Bulck describes the illness identity as the degree to which a chronic health condition becomes integral to a person’s identity. In fact, she offers four distinct ways of describing this in different people. Some experience engulfment. The condition dominates a person’s daily life. Others respond with outright rejection of their condition. They simply don’t think about it. Or they may refute the very idea that this is a real condition they have.

The next state she describes is acceptance. While people in this group don’t deny their condition, they try to live a normal life. “I am so much more than this condition,” is a typical sentiment you might hear from someone in this state.

Finally, enrichment is a state in which a person comes to believe that coping with their condition has led them to personal growth. They might tell you it has changed their values and their outlook on life.

Embracing an Identity or Dealing with the Condition

This brings us to two conditions that different people think about very differently – autism and obesity.

In the case of autism, the lived experience is very diverse, as Sam Farmer describes in The Hill:

“It makes sense that those individuals in the community whose challenges are relatively severe are likely to view autism as a disorder or condition which hopefully will be curable someday. Conversely, there are those in the community whose challenges are relatively mild, including me, who may view the diagnosis as being integral to self-identity, as bringing not only challenges but strengths and unique attributes as well.”

Clearly for autism, one size, or one approach, does not fit all people who might be living with autism.

Likewise for obesity, one size does not fit all. Some people who are committed to fat acceptance reject the idea that obesity is even a medical condition. In their view, it as an expression of fat phobia and a tool for rationalizing discrimination against larger people. They will even write the word as if it were an epithet: ob*sity. Their preference is to be called fat.

For others, the effects on health are undeniable. For them, bariatric surgery can be life changing. Effective medical care for obesity can transform their health and bring them to a state of acceptance or even enrichment through the experience.

Conditions Without a Cure

Here’s the thing. Obesity and autism are just two examples of conditions that one cannot simply cure. So people cope with them in different ways. No one approach will work for everyone. Stigma is often a pernicious factor. And thus, empathy can be more important than smart answers for dealing with these conditions. We have to meet people where they are.

Click here for more from Van Bulk on medical conditions and identity. For more from Farmer on the lived experience with autism, click here. Finally, click here for more on conditions, diseases, and identities.

Faces, painting by Pavel Filonov / WikiArt

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November 28, 2021