Putting people in boxes

I just finished reading The Invisible Kingdom: Reimagining Chronic Illness, by Meghan O'Rourke. She lived for many years with a debilitating illness that went undiagnosed. She ultimately concluded that she had chronic sequelae of Lyme disease, likely complicated by autoimmune and other manifestations that may have been triggered by Lyme disease or possibly just co-occurring coincidentally. In her desperation to find relief, or at least answers, she saw innumerable physicians and other practitioners, ultimately resorting to people with, shall we say, unorthodox ideas who many people -- I included -- would classify as quacks. She tried many remedies that she believed, or imagined, helped a bit, but she nevertheless continued to suffer pain and disability until she got substantive relief from antibiotic treatment. 

I'm not going to try to summarize all of her experiences and insights, but I'll focus on the aspects of her experience that are most relevant to my own work. When confronted with complex symptoms that they don't understand and can't confidently label diagnostically, physicians are usually worse than unhelpful. When medicine established itself on a scientific basis in the late 19th through the 20th Century, it established an ideology and a corresponding process based on classifying people according to disease labels, and responding with a corresponding "treatment protocol." 

 

This fit well with the germ theory of disease that was the initial scientific theory that underlay 20th Century medicine, especially once antibiotics and vaccines, and much later antiviral medications became available. A person has an infection with a specific organism, here's the chemical that kills it, and now you're healed. Eventually non-communicable diseases got fitted into similar boxes, with similarly specific treatment protocols. The proliferation of diagnoses and corresponding treatments was accompanied by a proliferation of medical specialties, that dealt with a subset of the boxes.*

 

When physicians are presented with a patient who they can't put in a box, they usually don't respond well. Finding their expertise inadequate is a challenge to their self-image, and they are often dismissive, think the patient is imagining or faking their symptoms, that the illness is fundamentally psychological. Their frustration will often manifest in unsympathetic or even aggressive communication. An example I have studied specifically is chronic pain syndrome. People with chronic pain for which no specific physical cause could be found were told that it was "all in their head," and indeed physicians came to accept very specific theories about this, that people had suppressed anger, perhaps toward a parent, that manifested as perceived physical pain.

We now understand that this was nonsense, but the truth is rather subtle. The phenomenon of pain is always created by the brain. If you put your hand on a hot stove, you will perceive pain in your hand, but it's your brain that's making you feel it. Yes, in this case the brain generates that sensation because signals from pain receptors in your hand travel up nerve fibers carrying information to the brain that it translates into pain. Eventually the brain sends signals back down that dampen the pain signals from the peripheral nerves which is why the pain from your burned hand fades over time. But sometimes, after physical or emotional trauma, the circuits can get stuck in the open position. 

We are also finally learning, thanks to the inescapable evidence from the Covid-19 pandemic, that episodes of infectious disease can sometimes be followed by persistent or perhaps interminable symptoms. These may be related to continued occult presence of the infectious agent, an immune response that fails to shut down, or the chronic pain phenomenon -- circuits reporting pain, fatigue or other kinds of distress get stuck open. We're just beginning to explore these phenomena, but at least physicians are less likely to dismiss or mock them -- at least the ones who are open minded and still learning. But they don't usually have really good answers -- there's still no magic bullet for these sorts of complex chronic syndromes. Even Meghan O'Rourke's relief, even though she believe she has a diagnosis, is only partial. 

 

But what physicians are still not good at, and the organization and financing of medicine does not facilitate, is the kind of long-term support and partnership that's necessary to help people figure out the multi-faceted responses they need to manage their condition and improve their quality of life. These may include medical, lifestyle, social and psychological approaches. But if they can't just prescribe a pill or cut out a lesion, doctors often don't know what to do.

*The International Classification of Diseases currently has more than 68,000 diagnostic codes. It has a hierarchical structure so these are mostly subsets of more general codes, e.g. Type 2 diabetes with various complications.