Patienthood: A Different Form of Being

And as for sickness: are we not almost tempted to ask whether we could get along without it? Frederick Nietzsche

Recently, I was involved in a discussion with several other mental health writers and editors regarding the most appropriate term to use for those we treat: patient or client. Our lack of consensus reflected that in contemporary medical and psychiatric literature.¹ Based purely on the Latin philology of the word, I much prefer “patient” from the root, patiens, “to undergo, to suffer, to bear.” “Client” comes from cliens, “a person seeking the patronage or influence of someone powerful.”² Proponents of the latter designation hold that it is a less passive and paternalistic phrase, although as Cahn astutely noted, the descriptor in Roman times was ironically used to refer to those of the plebeian class who were seeking the protection of a patrician.³

My scholarly preference obtained a quite visceral confirmation when I experienced an acute illness that I can only describe as an unwonted and unwelcome transformation into patienthood. The pedagogical value of illness in developing empathy in phy-sicians-particularly trainees-has been explored in narrative ethics with beneficial results.⁴ Some family practice training programs have actually admitted residents to hospitals for a short stay so that they can live the often challenging role of patients.⁵ While my bout with sickness was certainly not orchestrated, and my mindset at the time was the very opposite of discursive, subsequent reflection on the ordeal from a perspective of relative health has given me hitherto unappreciated insights into how illness is a different form of being.

In this column, I will parallel snapshots of my disease by writing in regular font and present tense to try to convey the immediacy of the ordeal. Commentary on my disease appears in italics and past tense to indicate the distance of interpretation. This device, albeit artificial and flawed, is used in an effort to paint a picture of the inner world of the patient that may illustrate many of the misunderstandings that health care professionals have regarding the motivations and behaviors of patients.

Patient report

I must be tired, or maybe it is the beginning of a migraine, I say to myself. That is, until the first episode of diarrhea hits. Right away, I explain it as another episode of irritable bowel syndrome (IBS) that was brought on by a stressful conference I spoke at last night. I get up and force myself to perform the morning hygiene routine and even take Kira, my dog, for a short walk, trying with every step to distract myself from the increasing abdominal cramps and the foreboding feeling that I am moving into a different state of unpleasant existence. I am slated to take my sister-in-law to the airport in a few hours. I decide to lie down until it is time to depart, reasoning that I will rally and then proceed from the airport to work. Twenty minutes before she is scheduled to leave, I call down in a weak voice from my second-story bedroom that I am not in any shape to drive. Fortunately, she quickly calls a cab and makes her flight. It is only when I hear the taxi drive off that I realize something is really wrong with my body.

We often wonder in amazement why patients wait hours and even days to come in to see us when they have what we recognize as signs and symptoms of serious illness. The billboards listing heart attack and stroke symptoms all address the entirely human tendency to rationalize the onset of illness. All of us would rather dismiss heralds of sickness as simply small perturbations from the normality brought on in our overpsychologized society (by either internal states or external events) and prefer to distract ourselves from pain and its ominous implications with all the multifarious diversions of our era.

Patient report

After the sixth episode of diarrhea in 2 hours, I totter down the stairs to the kitchen cabinet where we keep medications and frantically search for the package of loperamide that my mother uses for her own IBS. Although something in my memory reminds me that I should not take an antidiarrheal medication to treat an acute process, because I will only prolong what is surely an infection,6 I ignore the warning. All that is in my awareness is this present moment of pain, shared with a desperate desire for relief. As the day wears on and the number of visits to the bathroom reaches 18, I take one pill after another, even exceeding the maximum dosage of 16 mg/d-anything to stop the abdominal spasms that precede each episode.

Medication adherence or, more aptly, the lack thereof is the most frustrating part of being a physician. I regularly see residents become more embittered by this lack of what used to be prejudicially called “compliance” than any other aspect of training. Medline will give you hundreds of articles on the subject and yet, despite mammoth research, at least 50% of patients do not take their medications as prescribed.⁷ From the inside of my illness, I now understand why in a way that no study could ever explain. The proximity of pain, fear, and anxiety that is the psychic signature of physical illness dulls the mind; weakens the will; and, most important, changes the nature of time itself. All that existed for me was the awesome present that dwarfed in salience the impoverished and even unreal future. There was no intentionality but immediacy, and the capacity to delay the slight gratification of alleviation of suffering in the now for the much more substantial reward of a future recovery was eviscerated.

Patient report

Day and night are a blur of struggling the few feet from the bedroom to the bathroom and trying to make it back without falling. I, who usually disdain television, will watch the most inane programs if it can keep me from thinking about my misery. I, who never nap, come in and out of fitful sleep, awakened by the rumblings from below. My mother comes up and down the stairs, belying her 87 years, and tries to get me to eat or drink. Even a few crackers bring on the abdominal paroxysms until food becomes the great enemy. In the middle of a Saturday night, I wake up feverish and reach to find an empty water bottle. Grasping the walls and the rails of the stairs I go downstairs to retrieve more water. On the way back up, right in front of the bathroom, the darkness of night goes to the blackness of unconsciousness, and I hit the (thankfully) carpeted ground. In a few seconds (seeming like minutes), I pull myself up, only to faint again. After I come to with heart pounding, I crawl to the bed and finally sleep. When my mother comes in early to check on me and I tell her what happened, she tells me we must go to the emergency room and asks who can she call-or did I want an ambulance? I am much worse now and know I need help. We have no family in town, and somehow, in my innervated state, I am sure that there is no one in my life who would bother with me. I am not suicidal really, but it would be easier to just die than to dial the phone.

My entire career I have worked as a psychosomatic physician-what used to be called a “consultation-liaison psychiatrist.” I am supposed to be an expert in the psychiatric manifestations of medical conditions and the ways in which illness affects mood and coping.8 Yet, I have never before grasped how powerfully sickness isolates one into aloneness and how it shrinks the horizons of social support. When I returned to work and my colleagues and friends found out how sick I had been and that I had called no one for assistance, I was gifted with scraps of paper with addresses and cell phone and pager numbers that were accompanied by heartfelt expressions of affection and concern. I understood personally that which I had often encountered in the hospital as a clinician-the vital exhaustion that underlies refusal of procedures or medications or even the willingness to speak with clinicians who were intruding on personal pain. I saw the wish to die that sick patients so often voice not as an act of self-destruction but as the only means of self-preservation in the middle of asthenia-driven demoralization.⁹

Final patient report

It is Monday morning and I am able to go downstairs and turn on the computer for the first time since Friday. I call my internist, and am told he is out of town, so I ask to speak to the nurse. She tells me that 6 of 10 calls have been for this discomfiting intestinal flu and advised me to do all the commonsense things (fluids and rest). Like a child, I plaintively ask her if the infection will eventually remit, and she says most people are better in a week. I tell her I am a physician and apologize for needing so much reassurance when I should know better, and she responds kindly: “You’re not a doctor when you’re sick.”

Many mental health professionals may never develop a mental disorder in their lifetime, but each of us will ineluctably experience a physical illness. Far from being a passive and disenfranchising experience, patienthood is an elemental form of embodiment that touches the deepest resilience of the human soul. I am not arguing that illness is an unqualified good but that since it is an inescapable aspect of the human condition, reflected, appropriated suffering can guide us to avoid many of the mistakes we make in medicine because of ignorance and arrogance. Buddha teaches that suffering and death are among the few true universals, which, if sublimated, can become wellsprings of compassionate power that unite us to those for whom we care.¹⁰

References:

References

1. Sharma V, Whitney D, Kazarian SS, Manchanda R. Preferred terms for users of mental health services among service providers and recipients. Psychiatr Serv. 2000;51:203-209.
2. Webster’s New Universal Unabridged Dictionary. New York: Barnes and Noble; 1996.
3. Cahn CH. “Patient” versus “client.” Psychiatr Serv. 2000;51:677-678.
4. DasGupta S, Charon R. Personal illness narratives: using reflective writing to teach empathy. Acad Med. 2004;79:351-356.
5. Brunton SA, Radecki SE. Teaching physicians to be patient: a hospital admission experience for family practice residents. J Am Board Fam Pract. 1992;5: 581-588.
6. National Institute of Diabetes and Digestive and Kidney Diseases. Diarrhea. Bethesda, MD: National Digestive Diseases Information Clearinghouse; 2007.
7. Goff SL, Mazor KM, Meterko V, et al. Patients’ beliefs and preferences regarding doctors’ medication recommendations. J Gen Intern Med. 2008;23:236-241.
8. Levenson J, ed. The American Psychiatric Textbook of Psychosomatic Medicine. Arlington, VA: American Psychiatric Publishing; 2005.
9. Clarke DM, Kissane DW. Demoralization: its phenomenology and importance. Aust N Z J Psychiatry. 2002;36:733-742.
10. Brazier D. The Feeling Buddha: A Buddhist Psychology of Character, Adversity and Passion. New York: Palgrave; 2001.