No one likes a gloomy Gus. The downside of chronicling a chronic disease is the risk of seeing yourself as only the illness. Then other people will see you that way too. And so your identity becomes tied with only one of the many aspects of your life, and often the worst one at that.
Thankfully most humans are centered enough on themselves to forget the occasional gloomy reality from someone outside of their daily lives.
But repetition becomes reality, and eventually we are who we believe ourselves to be because others believe we are who we say we are too.
I came across a startup who is working on one of those classic swamp problems that seems like a great idea until you are well and truly stuck in the muck with bad incentives and no good solutions.
They want to use artificial intelligence to help patients with chronic diseases or complex medical cases to codify the many little details that might add up to the clues that crack the case.
By tracking subject inputs (unstructured data) and overlaying it with the other biometrics gathered by wearables and bloodwork they can help patients. I’ve seen hundreds of variants of this over the years.
Alas this new startup seems to have discovered a flywheel for marketing that relies on the problem I began today’s post with. We believe what we tell ourselves we are and eventually other people will believe what we believe.
They have chosen to market the app with illness influencers. Yes, that’s an actual category of influencer on TikTok and Instagram. Hot girls all have vague chronic illnesses these days haven’t you noticed?
And so a community forms and reinforces the identity that they all share. They are sick. And that makes them special. This gives life meaning. And did I mention lots of pretty girls have the most esoteric and exiting problems? Click to join now!
I find this to be a troubling, even borderline dangerous, approach to anchoring a community meant to help patients advocate better for care with their own personal health records. The incentive to remain with the privileged identity that makes them special only increases over time. Women reinforce themselves into intensely held identities all the time.
I thought about reaching out to them but I don’t want to get tangled with this problem. It is one for professionals which neither myself nor these founders are aside from everyone being a patient with chronic illness.
I do not wish for my identity to be the sick woman. The woman whose life was upended by a fertility protocol gone wrong in the early years of her marriage and in the prime of her life.
It’s one aspect of my reality. I do want others to be saved from my fate so I share it. But it is not who I am. Julie is not a sick woman. Julie is a complicated individual with a beautiful life and family and portfolio.
I had my own glimmer of hope today. Though I have repeated my troubles with my medical history I have never felt it was my identity. I’d happily give it up if I find a path to wellness. And I spend so much of my life trying to walk out of my troubles.
I have walked many side roads and pursued quixotic quests to find health. And some days I even find it. Today I got very good news on a fresh round of bloodwork. I’ve felt recently felt well thanks to some changes and an aggressive pursuit of new modalities.
I never want to get my hopes up too high as this effort has been a rollercoaster of ups and downs. But I won’t let go of the hope. The mere idea that this chapter could close and I might be a healthy woman is an identity I’d gladly welcome. And I’d wish that for anyone who takes on illness as a part of their identity.