Dear Patient, on a Scale of 1 to 10 How Much Joy Do You Feel in Your Body?

The Theater of Medicine

“Are you in pain?” the nurse asks robotically.

            “Are you kidding me?” I can’t help but groan. For the first ten year of struggling with chronic illness I managed to keep up the façade of the “good patient” but these days I hardly have the energy.

            Without looking up from her laptop or acknowledging my response the nurse continues. “On a scale of 1 to 10 how would you rate your pain?”

            “I am not going to answer that question. I have been coming to this office for over six years at least once a month. You have my complete patient history in front of you.”

            “Just give it a number,” she sighs, pushing her glasses further up on her nose, still glued to the screen. I could be anyone. I could be bleeding out. Growing a second head. And she wouldn’t care. Just as long as I reduced myself to a number she can plug into her graph. Just as long as I measure my pain and give it to her to prove that I exist.

            “No. I won’t give you a number. Not today,” I hiss.

This act of defiance is useless. The nurse is a cog in a nation-wide bureaucratic machinery that cares little for either of us. I am only making her life harder and more miserable. But when you spend your days, your hard-earned money, your very precious reserves of energy trying to receive some tiny amount of medical care you would expect that you would receive just that - care. Instead, you are forced to perform your illness, capture and simplify your pain, and accept your radical anonymity.

When medical professionals ask you these questions, even when they come from a corporate script, they are implying that they do not remember you and do not care enough about you to remember you. You are weekly asked to recite your medical history, your chronic condition, traumatic event by traumatic event, like the Rime of the Ancient Mariner to a person who will never remember the story. The cliché attributed to Einstein is, “Insanity is doing the same thing over and over and expecting different results.” Am I insane to go back to the doctor’s office and expect they will make eye contact with me or remember that I have an incurable condition that is often qualified as one of the most painful diseases in the world? Is it insane to expect care from doctors and the medical system? When we speak a story, we summon a story. To spell out, to speak out, was originally understood in its full spectrum of power: to spell is to cast a spell, to bring into being. To repeat our illnesses and medical histories again and again has an incantatory quality. To repeat the ways in which we are dying and decaying is to summon this story into continued relevance. And to perform this self-capture for an audience that refuses to listen or remember is Sisyphean in ways that are difficult to language. Difficult to live.

Every time a nurse or doctor asks you to repeat the same medical history you repeated last week, they are undermining your subconscious confidence in their attention to your body and condition. This has been scientifically proven to reduce the efficacy of their subsequent treatments and medical interventions. We subconsciously distrust people who can’t remember the simplest details about us, who don’t make eye contact with us, who don’t perform a physical exam. Answering these questions repeatedly forces the patient to internalize their doctor’s lack of care.

This effect can be classified under the umbrella of the “nocebo effect” – the dark twin of the more popularly known placebo effect.

For most of human history medicine was not seen as separate from the world of ritual. There was an understanding that healing is not as simple as a pill. It is a complex performance act that primes a person’s immune system and boosts a person’s confidence such that they are more likely to heal. The extraordinary ability of placebos to outperform drugs shows us that this performance is often even more important than the pill or surgery.

We have forgotten the theater of healing. And so we have been putting on terrible theater. This can have fatal consequences.

The Nocebo effect is opposite of the Placebo Effect and is loosely defined as the belief in adverse effects or a bad prognosis producing such negative outcomes. Patients taking placebos that are supposed to have negative side effects will with great likelihood exhibit these symptoms. A doctor that can’t remember a patient’s name or patient history sets a patient up to worry that the doctor will give them the right medicine. Worryingly, the nocebo effect may be much more prevalent than the benefits of placebos given the fact that researchers have found that people form negative perceptions much faster than positive ones. I want to argue that is partly because the nocebo effect is built into the very architecture of modern medicine. Most of the effects of this “bad theater” are unintentional but have huge consequences on health outcomes.

Doctors that no longer make eye contact and ask questions that cause you to doubt whether they remember you are engaging in a long-term nocebo experiment. Doctors that no longer perform physical exams are setting up a somatic doubt that they have properly “understood” us. Even when the diagnosis is correct and the cure if administered, we are deeply informed by this lack of confidence in our health providors. Patients who have low confidence in their doctors are less likely to have positive effects from treatments. When doctors list out bad side effects (even when they are fake) patients have shown a higher likelihood of developing these side effects.

Even more frighteningly, when a doctor informs us of a shortened life expectancy, a standard disease progression, a grim prognosis, we are much more likely to live out those stories. And when we are repeatedly asked to perform our pain and our illness, we are more likely to believe in it and to amplify its narrative importance in our life. I have experience this firsthand. After years of misdiagnosis and failing health, I received a proper diagnosis of mast cell disease and a genetic degenerative connective disease. At each doctor’s appointment, my specialist would list the things I should expect to go wrong with my body. Within six months I had lost more ground than I had in the previous seven years, manifesting many of the symptoms she had predicted. I wondered if she had given me a spell instead of a treatment. An incantation. A pricy one, too. She cost over a grand for each appointment. When I chose to become a noncompliant patient and stop seeing her my health evened out. I stopped deteriorating as fast.

She had given me bad theater. Unwittingly, she had given me a nocebo.

Interestingly enough, recent research into the neuroscience of pain shows that it deeply informed by something called “predictive processing”. Predictive processing has been described as “a controlled hallucination” and it is how we manage a world with an overwhelming amount of sensory information. The brain sifts through stimuli – internally and externally – and creates a homogenized prediction of reality. Think of driving home from work. Navigating your home. Many of these actions happen with such fluidity and engrained expectation that we are not seeing what is really happening. We are seeing our well-worn prediction of what usually happens. This is a useful tool in navigating an increasing complex world. Often what we are experiencing is a blend of “reality” and these sensory predications. But when it comes to chronic pain, these predictions can become a prison. If we are constantly asked to reaffirm our pain, to expect it, to notice it, we are much more likely to tell our bodies that it is indeed feeling pain. This can act to amplify preexisting pain, making it that much worse. Add that to the bad theater of a doctor staring at a screen asking you the same question that they did last week. Suddenly you are desperate to prove that you need their attention, their care. You say, “My pain is a 10. My pain is a 10.”

Suddenly a groove of pain is “storied”, set, expected, predicted into the future. And this very real pain wears down a sick patient, interrupting sleep and relaxation, cascading into other very real and often life-threatening symptoms.

            This is not to mention the root system the “pain scale” shares with Purdue’s profit-driven “pain movement”. The insistence on repeating the pain scale at every appointment not only reifies and amplifies our pain while undermining our confidence in our doctor’s memory and attention, it implicates us in a web of addiction, overdose, death, and capitalism’s hand puppeteering the medical system. Let me ask, do you want me to give a number to my pain or do you want to turn my body into profit? My pain is a ten. Give me a pill. Give me a bill.

            “I think health isn’t about being healthy or pain-free. It’s about the amount of joy I can feel in my body and in my life,” my friend Mary Evelyn Pritchard offered wisely on a walk through her wild property recently. She has the same connective tissue disease as me and understands the particularly degrading experience of these patient questionnaires paired with the slow removal of a doctor’s physical touch, performance of empathy, eye contact, and clear ability to listen to and retain basic information.

            Yes, I am in pain. Pain that defies measurement. That keeps me up all night. That limits my ability to move. But I am also in joy. The two exist simultaneously. AI can feel the buttery lick of autumn sun on my cheekbones. I can make a meal to share with my friends and my family. I can crush wild thyme between my fingers and flicker between taste and scent: pepper-salt, spice-purple. I can nuzzle my head against a lover’s chest and forget briefly that I have edges. I can dissolve for hours into epic novels set in distant star systems. I can lie like a spine in the river’s body. I can run my finger like a needle over the gills of an upturned mushroom, releasing a shatter-puff of golden spores. I can sing into the open throat of a thunderstorm.

            For all of you – my disabled, my hobbled, chronically ill, treatment-fatigued kin, I want to offer that next time a doctor asks you to recite your patient history and to capture your pain you respond not with an answer but with another question. Let us be intentional with our theater. Let us activate the ritual that expands our pleasure rather than predicts our pain.

            On a scale of 1 to 10 how much joy do you feel in your body?

Resources:

The Experience Machine: How Our Minds Predict and Shape Reality by Andy Clark

Medsafe article on Nocebos.

The Guardian: Enduring pain: how a 1996 opioid policy change had long-lasting effects

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