Fighting to be heard: contested diagnoses

This chapter explores how diagnoses can become sites of contest, rather than of agreement. Conflict can arise when illness refuses to yield the level of proof that epidemiology, clinical medicine, and toxicology require, or its existence is doubted within mainstream medicine. Other forms of contest take place when doctor and patient disagree on the symptoms of an illness, its exact etiology, or its treatment. This chapter explores core features of contested diagnoses and provides case studies to demonstrate the social dynamics that can occur when diagnostic processes create conflicts and disagreements. We begin by examining the often-fraught diagnostic processes that surround unexplained physical symptoms, providing a case study that illustrates the difficulties medical experts face when confronted with unexplained symptoms and the disagreements that can ensue. This chapter then traces patient experiences of, and responses to, a contested diagnosis, as well as the psychological effects that the absence of an illness label produces. We examine two major domains of diagnostic contest. First, we chart the contests surrounding environmental illnesses, demonstrating the challenges they pose to medical notions of proof. Such illness claims also expose how social factors such as class, gender, and ethnicity curtail access to diagnostic processes and the medical information crucial to crafting a diagnosis. A case study of nuclear bomb test veterans illustrates how structures of power and social practices can limit patients' abilities to seek an accurate diagnosis and gain recognition. We also detail the rising influence of environmental health movements that challenge conventional medical explanations of environmental illness. We show how activists shape the labeling of disease and political responses to risk, and reveal the tensions and dialogues between expert authority and patient experience. Next we examine attempts to medicalize and demedicalize certain mental illnesses, taking attention deficit hyperactivity disorder (ADHD) as an extended case study. Finally, while outlining some of the problems with the category "contested diagnosis," we demonstrate the importance of understanding the social, cultural, and political factors that shape conflicts within the diagnostic process.