When illness becomes identity

A few weeks ago, a friend sent an article that perfectly summarizes a trend that I’ve been thinking about for years: the personal identification of illness with identity. 

The article is worth reading as it chronicles a sick girl and her interactions with “the spoonies”: a community of hundreds of thousands of (mostly) women who write, post, and connect over their various illnesses. 

Humans need community, and in so many ways it’s a good and beautiful thing when people gather to support one another in challenging times. However, in our identity-politics-ridden world, I’m seeing more people take on illness as a core part of their identity. As Cooper, the subject of the linked article, mentioned:

“Someone asked me recently, ‘Who are you outside of being sick?’ and my jaw dropped,” Jacobson said. “I had absolutely no idea how to answer that question.”

You see this everywhere in our society and in the healthcare system. They’re not temporarily sick, they’re Spoonies. People don’t have diabetes, they’re capital-D Diabetic. And as people get captured by their illnesses, as their ailments become core to their identity, well, it becomes far harder to overcome said illness! 

Maybe this was fine in an era where the average American was healthy. But today, when 60% of Americans have at least one chronic disease and 90%+ of people have some level of metabolic dysfunction… people should be healthier. And I don’t think tying identity to illness will help. 

For Cooper, her circle of Spoonies validated her, cheered her on, every time she shared just how sick she was. It was the bond that tied her to the community:

She joined a group message on Snapchat called Sick Bitches. “All we did was message each other about negative things that were happening, like how our hips were hurting that day or if we had a headache,” Cooper said. 

It’s one thing to overcome diabetes and move from healthy to sick to healthy again. It’s an entirely different deal to move from Diabetic to not-Diabetic and lose the support of the Diabetic community in the process. Just look at the backlash Adele received after losing 100lbs (and improving her metabolic health, longevity, energy levels, etc). 

Our food system today views chronic disease as fundamentally divorced from our food environment. And when our food environment creates record levels of chronic disease, well, we double down. We make people feel that their medical conditions are part of who they are, that illness is an unlucky genetic break, that a lifetime of pills and medication management is fine and normal. And once people internalize that disease is identity, fixing disease is now in the realm of changing one’s identity rather than simply realizing that most illness is caused by our shitty food system and environment. 

Just imagine that every time I got a cold I identified as a “Cougher”, hung out with other Coughers online, had them supporting me on Twitter, sharing this newsletter, and so on. What are the odds I’d be highly motivated to overcome that cough? What are the odds that cough (or a version of it) would persist, would get worse? 

I fall into this identity trap in other areas. For so long I’ve identified as an entrepreneur. I write about entrepreneurship, it’s my career, I invest in startups, and many of my closest friends are entrepreneurs. If everything I’m doing fails, it’d be SO HARD for me to “just” get a job. Not because I’d have a hard time getting a job (at least, I hope not ????), but because I’d have a LOT of work to do on my sense of identity as an entrepreneur. And I’d pretty immediately be the odd one out among a set of my friends. 

In the end, I think the best thing you can do to avoid this sense of self/audience capture (as I mentioned at the end of the last episodeis to keep your identity small and carefully guard the number of “I am X” you allow in your life. As Paul Graham said in his classic essay on identity:

If people can’t think clearly about anything that has become part of their identity, then all other things being equal, the best plan is to let as few things into your identity as possible.

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