Why Did I Get Sick? Creating a Clinical Narrative (10/15/12)
What Happened To Make Me Sick?
Why? People want to know. Why they have an illness and new, never before experienced symptoms plagues, obsesses and fascinates patients.
The human brain thrives on order, creating it wherever it can. The confusing pixels of a computer monitor processed in the brain come to represent a 1930s film noir or a pile-up on I-75. People want to know why – why do I have hypertension, cancer, osteoarthritis so bad I can’t walk. They want to know how this happens, where it all comes from.
And doctors are supposed to provide answers.
Many answers doctors provide are in the form of diplomatic statements. Sometimes it’s fine to say “I don’t know”, but many patients and clinicians say that response is inadequate.
So other terms are cooked up with greater or lesser sensitivity. Your narcolepsy is idiopathic – which translates as “nobody knows” but sounds better. The reasons for your osteoarthritis are “genetic”. Yes, your father had osteoarthritis, as did your grandmother, but so eventually does most of the population. A more interesting answer comes when severe osteoarthritis occurs in the 30s or 40s – because then the “genetic” answer argues a different mechanism than what comes to afflict most of us.
But what many people want is some understanding of where all my symptoms came from – in order to figure out where to go. That’s when you start to create usable clinical narrative.
Troubles All Around
Recently a kind woman walked into my office. She looked at me a bit cross eyed. It took me a little while to recognize she was partially blind.
At first she was not at all sure what I might do to help her. She found her list of problems overwhelming. She couldn’t sleep; she had been diabetic for decades; she had gained much weight; she could not think as well as she once had, even when she was not as depressed as now; she had suffered small strokes and heart disease; had thyroiditis; inflammatory bowel disease, which periodically left her unable to control her bowels; felt so generally awful she had returned to smoking; rarely left the house.
That was simply the beginning of the list of what afflicted her. Her life was upended. How had this come to pass?
I tried to explain it to her in terms of two major changes: autoimmune disease – the official medical causes for her type I diabetes, hypothyroidism and Crohns’ disease; and the the follow-up effects of diabetes itself.
Her diabetes had appeared suddenly in her early 20s. She was athletic, well. Suddenly she walks into the ER with sky high glucose levels.
I tried to explain that the immune system is critical to life. It affects virtually every system in the body.
Let’s say you get a cold. The infection puts out new chemicals the body hasn’t seen.
It finds them and often destroys them. Sometimes, like Katharine Harris’ over broad choice of voter “felons’ lists” in the 2000 Florida election, the immune system goes on to target or exclude a whole series of innocent bystanders. They are not foreign, not illegal – and they never did anything wrong.
In this case, the attack included the pancreatic islet cells that produce her insulin. Quickly they were targeted and destroyed. She became diabetic – no insulin production to speak of.
Then her immune problems continued, going on to produce similar effects on her thyroid (thyroiditis) and gut (Crohn’s).
Here was a mistake, an information issue. Her immune system had identified – and continued to identify – friend as foe.
Diabetes then provoked most other of the complications. For glucose is the main fuel of the body. Interfere with it and nothing works quite right.
It’s a bit like looking at the energy flow at a city. Suddenly all the gas station pumps become leaky. Gas lines erratically rupture. Electricity comes and goes – and falling electrical wires electrocute unwary pedestrians.
The small strokes, the partial blindness, the changes in heart and arteries, all had “flowed” from the overflow of glucose – and of medical attempts to control it.
For low sugars are often worse than high ones. Get glucose too low and cells are starved for energy.
And they die. They die particularly easily in the brain – where regenerative capacity is sometimes less than other organs.
Some of these brain changes had helped make her depressed. When people get depressed they smoke – cigarettes contain tiny amounts of monoamine oxidase inhibitors, a form of antidepressant.
The amounts are too small to really help people. Yet nicotine itself gives the illusion of greater sharpness and lower anxiety.
Overall her body’s information system was working poorly. That was the story of where she had been.
Now we had to give answers as to where to go.
Information – Regeneration –Health
The body is a giant information processing system. Both diabetes and autoimmune disease massively disrupt that information system and its ability to self-regulate.
The first order of business was to control diabetes – to make her glucose levels neither too high nor too low. An insulin pump, which can work marvelously, was already in place.
But it must be tended carefully, frequently, and intelligently. Still, diet and physical activity remain bedrocks of diabetic treatment. The forms of energy used – the types and amounts of food – and how they are used walking and moving – radically ameliorate the effects of disease.
And though it is difficult except at the very beginning to change the autoimmune course of type I diabetes, lifestyle changes can make it easier for the immune system to operate. They include the quality and types of rest, active as well as passive (sleep). Diabetics experience lots of insomnia, leg kicks, and apneas – all can be directly treated. Body clocks also strongly affect immunity – getting timing right makes it far easier for the body to work as a whole.
And though the mechanisms are not yet understood, social engagement, getting out of the house, talking to friends, can all ease stress and improve immunity.
So there was an explanation for her of why things had come to pass. Impaired autoimmunity and particularly the diabetes it caused had produced most of the ill effects on her life. And there was also a clear place to go. The efforts she could make were many – to control diabetes through diet and moving. Then add her efforts to socialize, talk, visit and travel to further improve her health.
A clinical narrative lets people know where they came from and how to progress. Humans do much of their remembering and teaching through stories. Past is more than prologue.
Plus there is a simple narrative that can be understood by all: the human body as information system. Give it the wrong information, as in a cold inducing a mistaken autoimmune change that produces diabetes, and a whole cascade of effects occur that change the very basis of your life.
Understanding that information mistake gives you a chance to correct it. And when corrected – even partially – many other connected illnesses, like blindness and depression, can be lessened.
Give the body the right information and it can regenerate right. And that basic narrative can lead to a universally admired result – better health – for all of us.