NEDA Week: Illness and Identity

A few days ago I heard a piece of this TED talk on NPR’s Ted Radio Hour. They often add additional tidbits and interviews to the talks, and without paying much attention consciously my brain grabbed on to this quote from an interview: “As long as you experience your condition as an illness it’s a prison and once you experience it as an identity it’s the source of your freedom”. The sentence blew me away.

My mother often asks me why I search for labels so often. I collect them, just like I collect facts and words. Something about the sentiment that Solomon expresses here suddenly clarified why. Before you put a label on something, it’s just a series of symptoms that make your life difficult. Labels are the first step in turning an illness into a community and an identity.

There have been some attempts in the past to create an identity around eating disorders. Primarily this seems to have happened in pro-ana communities. Unfortunately these appear to have focused on finding an identity in the behaviors associated with eating disorders rather than some of the underlying common experiences and traits that could be used positively, and have become really negative places instead.

In thinking about eating disorders, I don’t think that there’s any way we can deny that there is an element of illness to it. It causes pain and suffering, and reduces someone’s ability to keep their body healthy and functioning. But underlying those symptoms are certain ways of thinking and viewing the world that may in fact be part of an identity. Now many people may see these traits as inherently maladaptive, but most worldviews have some negatives and some positives. I’d argue that the underlying traits in eating disorders are the same. While perfectionism, black and white thinking, and ridiculous stubbornness may seem like bad things, there are instances where they can be used in the right ways to achieve some amazing things.

There is no way to force an identity to emerge out of an illness, and it’s a long road forward, but I do believe that we should spend some of our time thinking about how our illnesses have created a community, created common experiences, and led us to see things in a unique way that sets us apart. I believe we have rich experiences that can create a culture we can feel proud of, rather than an illness we are ashamed of.

None of this is to say that I think we should revel in something that hurts us, or that we should seek to hold on to our illness, but rather that the support of a community and the depth of a subculture can be wonderful things, and that creating them can help raise awareness and decrease stereotyping and stigma.

Any thoughts on what we can do to create identity where others see illness?

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