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Amélie’s story is important on many, many levels and gives, I hope, people with similar stories some comfort that they are not alone. I want to speak to the aspect, however small, that I can relate to.
That is this: Our health system is designed to fail.
That is this: Our health system is designed to fail.
Grounded in a “car mechanic” mentality, our health system rests on the assumption that everything is fine until it’s not. When your car makes a funny noise, you bring it in to the mechanic. They diagnose and fix and send you on your way.
Similarly, the US health system assumes you’re in perfect health until you’re not. When you’re not, you get a diagnosis, you get it fixed, and you’re done, back to “perfect health”. If you’re very lucky, your insurance deems the fix worthy of a benefit.
As someone who’s lived with chronic conditions since the age of 6, I’m well aware that I’m not a good fit in this system. Moreover, my conditions are rare, which means there’s not a well-understood straight line between “problem” and “solution”.
Still, the system tries, dictating treatments for a specific condition, unwilling or unable to acknowledge the impact on other aspects of my livelihood. And this is where the system fails: Conditions of the human body are not isolated.
There are connections unassailable and indelible between our psychology, our metabolism, our physiology, and our emotional well-being. Not to mention our relationships and family, or our life circumstances (like abuse or poverty).
The connections between physical, mental, environmental, and economic health means that tugging at one unavoidably affects the others. Even within the body, we’re learning that the health microbiome in your gut affects your mood and cognitive abilities.
The system’s underlying assumptions, the very language it uses, belie a deeply flawed understanding of health. Insurance companies want to know what box your problem fits in. Health professionals want to know which system they should focus on.
Everyone wants to know if you’re “cured” or “done with treatments.” The truth is that not a day goes by when I don’t think about my conditions, when I’m not aware of them. They’re baked into my identity.
The most modern understanding of our health and well-being suggests we’ve barely scratched the surface in how all these things fit together.
You might say, hey, a common cold is a common cold, right? Except I live with someone who’s immunocompromised. If she gets a cold, we’re not talking a week of over-the-counter medication. We’re talking about 4+ weeks of managing symptoms to avoid pneumonia.
But that type of thinking (which deals with only the most basic equation) is outside the scope of our health system. As Amélie’s story shows, the equations get far more complex and interdependent.
There are a lot of great health care professionals out there. I’ve been privileged to partner with some of the best. But they, too, are held hostage by a hostile system, limiting office visits and rejecting patients who don’t fit into a neat box.
Even the notion of a “patient’s bill of rights” plays into the same old assumptions. I’m still a patient when I leave the doctor’s office or hospital. The medications I take are referred to as “maintenance drugs,” as if taking my medicine is akin to an oil change.
Our stories are personal and unique. But our experiences speak to a larger pattern: that we can’t treat medical conditions as isolated incidents. We need a health care system that acknowledges the complexity and interdependence of our health on multiple levels.
Thanks to Amélie for sharing her story, and for inspiring not only this thread but also courage in the face of a system designed to fail.
