When you go to your doctor or primary care provider, what is it that you are typically seeking?
Are you looking to get better? Are you looking for a diagnosis? Are you looking for guidance/mentoring? Are you looking for a voice of authority? Are you looking for a prescription for a pill or medication that you know can take the edge off? Are you afraid? Are you doing it because it’s what society tells you what to do? Have other modalities/providers failed to address your health needs?
I’ve been treating a patient for about a year and half now, somewhat sporadically, providing acupuncture and most recently, herbal medicine. The patient sought me out after my having switched to a new practice location, a new location which provides a more intimate setting, the option for insurance to pay for treatment, and overall a better option for the patient.
In the last ten months, the patient has been exhibiting progressively-worsening symptoms, and has been seeing neurology specialists, working with a PT, and gone through the gauntlet of tests, blood panels and self-medicating with marijuana and hikes in the woods.
Recently, he admitted that all of his tests have returned showing inconclusive results, and his doctors have described his condition as idiopathic. Idiopathic, if you don’t know the term, essentially refers to a situation in which doctors have run through their particular knowledge and expertise, chased the review of systems and differential diagnoses, and have come up short.
The root of this word is interesting. It finds origins in the Greek idioumai, meaning “to appropriate to oneself”, “personal, private”, and properly “particular to oneself”. This is from PIE *swed-yo-, suffixed form of root *s(w)e-, pronoun of the third person and reflexive (referring back to the subject of a sentence), also used in forms denoting the speaker’s social group, “(we our-)selves” (source also of Sanskrit svah, Avestan hva-, Old Persian huva “one’s own,” khva-data“lord,” literally “created from oneself; (OED).
The patient said he felt both angry and relieved, and he struggled to put words to it as I prodded him to say more. I asked him what he was looking for from these tests and procedures. He said that he was hoping for a treatment; that if they knew what it was, maybe they would know how to treat it.
Having worked with him for quite some time now, I have several insights regarding what might be happening with him, at least from the Chinese medical perspective. However, this has been perhaps the first time that what I’ve felt and observed in working with him has elicited a more specific pattern that is known in Western medicine. From the outside, his condition seems very close to Multiple Sclerosis. Progressively worsening, neuronal die-off and mobility issues; most recently, difficulty swallowing, visual and speech changes. I believe this was heavily influenced by an untreated concussion years ago. He is someone who relies on himself and survives on himself. A notable presentation I’ve noticed in the clinical setting, has been a kind of self-deprecatory laughter, most often presenting when describing a very upsetting reality, especially that of a complex of symptoms he’s encountered throughout the week. It is almost sardonic.
I almost expected him in our exchange to express that he desired to know the name of the disease; he mostly did. But it seemed he wanted to know the diagnosis as much as he didn’t. One of the most curious symptoms has been his description that in order to hold/grasp an object, he has to physically look at it with his eyes first, otherwise his hand cannot meet it. That is, he has to see his own hand.
My own inclination, as a provider, was to want to alleviate the mystery or fill in the unknowns, which for him are many. But I realized mid-interaction that my question (what he is looking for from working with these experts, obtaining tests etc) seemed to match his. Was I looking for a diagnosis in order to treat? Was I looking for a name?
Several times, the phrase “M.S.” grazed my tongue, and I held back. A large question formed; what good would this do him? First, and foremost, I am not medically qualified to offer a Western medical diagnosis. But secondly, it seemed a new and unknown universe could spring from the supposedly known. It is as much a liability to sort of know than to fully not know. The skill of the practitioner is actually to not make known the guesses all that often. I believe we’re afraid to really approach and accept the full implications of placebo, as we might have to reckon with how our diagnoses are just really good stories. We use these stories to compete, like Greek aidoi, for the prize. Only the prize here, is to get the patient to believe our story more than what they’ve come to tell themselves.
With the inappropriate laughter, I couldn’t help but wonder that the complex of symptoms my patient encountered were, for him, rather unbelievable stories. What I mean is that when being witness to the capabilities of his own body, this man was equally inspired as he was terrified by himself. Overall, his conditions spoke to overactive immune response. But what I felt, and observed as his provider, was someone whose own power had been divorced from its own context. In other words, he’s begun to deny, to disbelieve his own being. Vine Deloria Jr. in his Custer Died for your Sins: An Indian Manifesto once said, “When death becomes unreal, violence also becomes unreal”. I sense that my patient, in a deep place within him, is a purely sensitive being. But also with this sensitivity came an inability to accept the death of parts of himself along the way. He’s responded by creating in memoriam stories which keep those regions living, at least partially and not in totality. Trauma does this. It elongates the mourning time, which might otherwise involve more specific emotions, feelings, symptoms, all of which show as an emergency. Rather than emergency, he’s transferred these into first stories, that then became unbelievable stories, and finally, legends within himself. The problem with legends, as Plato described to us through his works comparing mythos and logos, was that they were unverifiable and irrefutable.
I used to scoff at the Western medical provider who’d resort to what felt like such a lazy term in the idiopathic. What I’ve learned, time and time again, and especially in this patient, is that idiopathic is almost too precisely the term. It’s precisely the term that the Western medical provider uses to do everything in their power and expertise to refrain from blaming the patient for their own condition. An autoimmune disease, by nature, is harm that you are enacting upon yourself. That is precisely what it is. When someone asks, “what is the cause of this autoimmune condition?” And the doctor responds, “well, it’s when the body’s own system is attacking itself”, the patient somehow feels better that they have an answer, but not fully a solution. However, if the doctor had said, you did this to yourself, you’d be sure to hear about a possible lawsuit or some kind of censure, in the least, the accusation of poor bedside manner.
What we have here is the body becomes an auxiliary “self” that is somehow “to the right” of the person. What I mean is that the medical dialogue becomes method through which the person needs an auxiliary blame that is beyond theirself, when the condition is truly idiopathic. It gives the patient temporary breathing room when their condition has potentially self-originated. The problem with this approach is that as the patient bides time, they can become susceptible to building narratives that support the unknown/mysterious symptoms. The mysterious symptoms are so because the person is using the creativity of their own body to create a new outlet for who they are — new life as the dying parts of themselves die off.
Only, if this becomes too rampant, the story is too imaginative, then the patient creates legends within themselves that they are unable to live up to. They create conditions in which their projected capabilities far exceed what the “who” of their life is capable of. The immune response supersedes the healthy system. Idioumai, as the etymological dictionary defines, describes a condition that is particular in breed to the individual. It cannot be mirrored, except to themselves. If it cannot be mirrored, they cannot have empathy for that aspect of themselves. If they cannot see it, they cannot locate it. As is the case for my patient, it is only when he moves his own hand in the line of sight that he can grasp what he sees. He has to be the one to handle it.
My job as his provider is to show him that his life and his stories are precisely in his own hand. That his condition, it appears, is idiopathic. One more aspect of this, I believe helps elucidate the condition. My patient is getting a little older. He’s not elderly, but he’s also no young sprite. It is possible that when aging we can often face the reality that we are not who we used to be, and that this becomes the so-called legend. The body, no longer able to finance that former self, a sort of somatic alimony, demands the body to continue to operate under the same conditions, requiring the same resources, and in my patient’s case, freedoms. He cannot accept that he cannot be free. As such, he becomes a slave to himself. And not even to himself, but his own body. The body in this case becomes an auxiliary excuse, a slave to the self. Rather than becoming accountable for who he is, he punishes the body that finances that self. What occurs, as Vine Deloria Jr. suggests, is violence, and specifically, violence that is unreal to the person. When this patient observes and recounts his own story, this is when the symptoms really begin to reveal. He laughs tragically at the complex of symptoms he encounters, the way a drunken man might describe his escapades the night before; a sort of “Can you believe that shit?” sentiment. “I mean, could I be any more pathetic? “Could I be in a worse situation?” These are examples that are not directly uttered by the patient, but reveal themselves in comments and inconsistencies in how the patient acts, performs or retells their symptom in narrative, and how they actually appear or present in the clinical setting. When attempts to reveal how he suffers to himself, with the witness of another, it is sabotaged by self-mockery. When he describes he’s in pain, he hears only the laughter at its absurdity.
This is a strong example in which the patient demonstrates that they are their own author, and the story they are telling is in their own hands. By refraining from offering a diagnosis, the patient moves closer to their own diagnosis. The skill of the practitioner is to ask the right questions. My question to this patient is/was: what are you looking for from these doctors? Is he looking for them to say that they are more expert in his life than he is? Because, experience has shown me while working with him, that he is the master of his own destiny. He has made his mind more powerful than his body. But this has led to making himself a slave to his own body. If he can blame his own body, he won’t have to blame himself.
It is of my experience and opinion that this reveals the true limitation of Western medical diagnosis, and it is that our conditions are frequently idiopathic. We cultivate persons/personalities who by every ounce of themselves resist the possibility that someone else could be in control of who they are. We cultivate attitudes of supreme control over who we become, what we do, what we’re capable of, and what we leave. A prescient teacher has often noted that what would otherwise be an emergency, in terms of disease and the body, becomes instead a chronic illness. What we cultivate as chronic illness is perhaps a persona that has outlived its own usefulness, but cannot let go of the idea of immortality. I am not saying that my patient wants to be rendered immortal. However, when our stories supersede who we are, then we can only be known in our stories and how good of a story we can tell.
Rather, health or wellbeing must take into consideration the limitations of knowing, of certainty, and this is true of who we are.
Circling back: why do you seek out your provider? Are you looking for a diagnosis? Are you looking for clarity? Are you looking for better ways to get to know yourself?
I might suggest, start here: get acquainted with the most unknown aspects of who you are, and rather than solving them, interrogating or exposing them, work towards accepting the mystery. The best stories are those that don’t tell you what to believe about yourself. The best stories are those that want to deepen what it means to be.