Standing at the foot of her hospital bed, it was clear to me — as it was to the attending physician — that my grandmother was suffering from a disease: an obvious structural disorder identified by scientific medicine as negatively impacting her health. Hilar mass, cavitation, hypercalcemia. Keratin pearls, intercellular bridges. Hemoptysis, dyspnea, edema.
It was also apparent to this eight year-old, however, that she was burdened by an illness, or an impaired sense of well-being. She was bedridden, depressed, solemn. She lost her beautiful hair, her clear voice, her levity. The disease existed regardless of her knowing, but her illness thrived in her conscience.
My grandmother’s lung cancer was being treated by the best physicians trained by the nation’s top institutions and armed with modern technology. Her illness, that set of subjective experiences and feelings which helped her cope with cancer, relied not on this specific expertise, but a compassion which came from an understanding of her private hardship.
I waited there in naïve wonder, pondering loaded questions. Why did my grandmother suffer? What did it mean to be a patient? What could be done to support her, physically and emotionally?
When we think about disease, we often rely on definitions rooted in physiology. This classification is pragmatic and beneficial, allowing physicians to perform their work with attention to biological schema. On a greater scale, however, disease encompasses the entirety of the individual by framing identity and altering perception. Disease is as much cultural as it is chemical, and as historical as it is personal. The Oxford English Dictionary describes disease primarily as “discomfort, inconvenience.” First recorded in the early 14th century, a hiatus in human history between the Middle Ages and the Renaissance, ravished by the Little Ice Age and the Black Plague, the word “disease” came to be a signpost for general conflict between person and nature. Disease soon acquired the essence of sickness in the latter half of the century, and was understood to be disorder: a distasteful bodily feeling that was symptomatologically manifest. Though “disease” expanded its definition with time, acquiring more modern dressings adorned by Enlightenment-era natural science, it continued to retain the foundational sense we might now name “unease.” Disease represents the abnormal conditions and adverse events which change its victim’s habitus, and is used by today’s physicians as an objective diagnostic term.
The central idea of illness is, however, an ancient concept that invokes religious and moral themes. One of the earliest mysteries which humankind sought to explain, illness — innately malevolent, morally wrong and unpleasantly uncertain — entered our collective consciousness epochs before scientific medicine, whose influence nonetheless will likely supersede that of its predecessors. The earliest ideas of medicine and health were intimately tied with religion, as still persists today despite growing scientific knowledge. Early Chinese medicine and that of the Old Testament shared a supernatural belief about illness, which was explained by a fate controlled by external forces, players or spirits. A body of Sanskrit literature, the Veda, contains prayers of health to the gods who were believed to have healing powers over evil entities that disrupted three bodily “humors,” comparable to Hippocrates’ estimation of four humors: black bile, yellow bile, blood and phlegm.
The development of scientific thinking in Greece, however, competed with the prevalence of mythological belief. Many non-Western theories of illness also grew under the guise of predominating beliefs and often melded with them, often influencing human behavior by shaping the idea of (and creating meaning for) an unknown disease. The changing landscape of disease evolved concurrently with advances in human thinking, though misrepresentation and misinterpretation were omnipresent. Our basic responses to the nature of disease and the meaning of nature compelled our ancestors to devise both reasonable and unreasonable explanations to corporeal phenomena. Still today, we use metaphor as a device for understanding disease and illness. Our perceptions of both disease and illness allow us to identify, treat and think about them.
A skim through “Harrison’s Principles of Internal Medicine” or the latest edition of the DSM gives a clear idea of disease as diverse, multiplicitous and informed by numerous fields. Disease is diagnosed and treated in a variety of manners, and differs from person to person. Though a disease can be universally accepted to follow a particular pattern, its specific course through an individual at any point in time is likely to take on a character of its own: a biological and psychological effect/affect which unifies the patient/subject and the disease/object. Illness is dynamic, following both top-down and bottom-up designs; it can define a person directly as well as be recast or redefined by one’s emotion, perception and worldview. Basic beliefs about disease and one’s relation to it constructs illness as a theme in an individual’s life.
Illness can be thought of as a metaphor, which analogizes or associates a subject and an unrelated object. Illness refers to an abnormality that the subject may not identify as part of oneself; many who consider themselves diseased or ill feel that they contain a foreign pathogen or harbor a “foreignness,” something exterior or unfamiliar which does not effectively characterize one’s sense of self. Because we may see disease as “not us” or “other,” we can ascribe it its own being. Illness largely relies on stigmata and vernacular, and is molded by the conceptions and expectations of both society and the individual. The way in which we speak about illness, as a whole and as parts, and the metaphysical contours we create for it give it simultaneous color and uncertainty. It becomes an emblematic homunculus, containing all the ideas — true and false, scientific and religious, causative and caused — that render its caricature. While disease may depend on signs and symptoms, illnesses rely on mood and metaphor for communication, as many ideas are wont to do.
Disease and illness are often used interchangeably, and though they are descriptively different they are embedded in a common dialogue. Illness compels the patient to seek medical attention, but the disease is what prompts treatment. The emergent qualities which culminate in an illness do not always reflect the internal disease; what exists in the eyes, ears and hands of an astute physician is not always what is felt or experienced by the patient. Disease provides the raw materials with which illnesses are sculpted. Disease, however, has benefitted from modern advancements in medicine while illness has retained the characteristics which have conceptualized human suffering for years. Thus, though we can more accurately identify and treat diseases that our fathers and grandfathers could not, in many cases we pictorialize and react to them in traditional, conditioned ways.
The physician is rightly trained to regard infirmity as a physical transgressor whose actions must be controlled. From the physician’s point of view, disease is a tangible task. To the patient, the disease is a pressing problem. To the physician, the illness is sometimes a hindrance to diagnosis and treatment while to the patient it is a characteristic burden that can be duly informative. To the patient, the illness may be more real than the disease, for though the disease governs physiology the illness directs the patient’s psychosocial behavior. The physician, however, understands that the underlying issue must be assessed before any improvement can be considered. Even so, an open-minded approach to both disease and illness is warranted. Because they are not mutually exclusive, disease and illness can be simultaneously addressed in the management of a patient. The disease may be detectable only by the physician, while the illness is reportable by the patient. The attitudes of the physician and patient should be made compatible in order to effect an optimal approach to medical care. The distinction between being and feeling sick, and an attention to what causes death versus suffering, can reconcile the oft confused relationship between disease and illness.
Illness has historically been seen as an expression of character: something intimately tied to a person’s being and representative of their thoughts, actions and beliefs. It has long been felt as a way for the body to describe itself: how the disease in question is construed in the totality of the person. Explaining illness solely in terms of disease is a reductionist constraint which neglects the complexity and threatens the quality of human life. Sometimes, a patient may have an asymptomatic disease, in which a disease is present without producing illness. Likewise, there are many patients who experience particular symptoms which are unable to be explained by disease. Two individuals with the same disease may also report different illnesses, a result perhaps justified by minor differences in physiology, cultural variables and “extremes of stoicism [which] often contribute tragically to delay and noncompliance.” Nonetheless, is it in the best interest of the physician and the patient to communicate these ramifications of sickness.
My grandmother needed the qualification of her illness as something particular to her: something which struck the entirety of her being, affected the whole of her person, a cause of suffering that influenced her quality of life. It is dissatisfying to be labeled with a disease, and difficult to adjust to the changes it brings. It is difficult to anticipate with full guarantee the presentation of a disease in a person. Both the well-controlled and poorly managed disease requires the care and attention that extends beyond the blood smear or CT, for there are aspects of sickness that are not concretely detectable or officially testable. Oftentimes, it is the illness which a patient wishes the physician to fix and which becomes the culprit of their disenchantment.
In that hospital room, I did my best to console the illness whose disease was being diligently managed by physicians, nurses and technicians. I did my best to remind my grandmother that she was a strong woman, and not a numbered carcinoma.