Viewing the HBO movie “The Normal Heart” – showing again Sunday and next Thursday and Friday – brings you vividly back to the beginning of HIV/AIDS in New York City in the early 1980s. People are struggling with a deadly illness that had no identified cause, a range of symptoms, and appeared to target a specific group, leading some to label it “the gay cancer.”
Playwright Larry Kramer's work first appeared Off-Broadway in 1985. It was a crucial time in the history of this disease. The human immunodeficiency virus (HIV) had been identified only the year before, a diagnostic test that year, and there was no approved anti-retroviral treatment until 1987 – the year that Kramer founded the game-changing organization ACT UP. Today we know that HIV/AIDS is a global public health crisis and that the disease has taken 36 million lives. More than 35 million more are living with the infection; back then it meant certain death.
Watching The Normal Heart provides many lessons, among them, how diagnoses are created, how they reflect the social context in which they emerge, and how public acceptance of a diagnosis involves not just the spread of clinical knowledge, but a negotiation about the individual and social meaning of the entity that is being defined. The dictionary definition of “diagnosis” is “the determination of the nature of a case of a disease or the distinguishing of one disease from another” – but really, it is much more than that, as the diagnostic evolution from “gay cancer” to HIV/AIDS tells us.
Diagnoses come and go and symptoms get new explanations. The diagnosis “neurasthenia” appeared in the late 19th century. It was characterized by physical and mental fatigue, insomnia, depression, and irritability. Deemed a disease of civilization, it was also said to be a condition largely afflicting upper-class men. Today the symptoms of what was once called neurasthenia are given different definitions in the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM), and “neurasthenia,” is no longer a diagnosis. However, the World Health Organization's International Statistical Classification of Diseases and Health Related Problems retains the definition, and neurasthenia is an important diagnosis in Asian cultures. Diagnoses are cultural products as well as clinical determinations; their meaning changes over time. Until 1986, “homosexuality” appeared in the DSM in one form or another.
Perhaps the best example of how diagnoses are transformed can be seen in the attempt to understand responses to battlefield conditions. “Soldier’s Heart” was a diagnosis given to American Civil War veterans. During and after World War I thousands of soldiers received the diagnosis of “shell shock," and the terms “battle fatigue” and “combat stress” began to be used during and after World War II. Today, we apply the term “post-traumatic stress disorder” (PTSD) to combat veterans as well as others who have experienced traumatic events.
Other cultures have different names and descriptions for the after effects of traumatic events and different diagnostic categories for various experiences of illness. And, of course, they evolve over time. A diagnosis may be a rational way to organize research, treatment, and reimbursement for care—in short, a useful shorthand and a practical category for organizing current understanding. But let’s remember that diagnoses are historically and culturally bound, and, as The Normal Heart demonstrates, they are labels that can be steeped in cultural bias and lead to discrimination. Before we name a disease or condition we have to attend to what the name we give it might mean now and in the future, and to be prepared to abandon, revise, or embellish, our initial determination.
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