Erasing Stigma Is Much More Than Changing Words

Psychiatrists and others have called for renaming diagnoses with less stigmatizing terms, and an intriguing exercise has emerged for coining creative terms for schizophrenia, including “integration disorder” and “dopamine dysregulation disorder” (3) or the more ambitious “youth onset conative, cognitive and reality distortion,” or CONCORD (1). The World Psychiatric Association and European Psychiatric Association have put diagnostic relabeling on their agenda, and a survey has shown that experts of psychopathology (N=79) endorsed renaming schizophrenia (4). Professional associations in East Asia are ahead of those in most other locales in formal relabeling of diagnoses, in part, to highlight the optimism of recovery prognosis (2). This is a relatively new endeavor, and research on its impact is still evolving. Much of the research is from Japan, where results indicate that psychiatrists and other mental health providers soon learned new labels (5). A survey of Japanese psychiatrists suggested that new terms facilitated education about illness and psychosocial interventions, although the survey results were reported as part of a larger review and thus the report lacked specifics about methodology (2). In terms of impact on public stigma, awareness of the new diagnostic label was inversely associated with measures of conscious (2) and unconscious (6) social distance—although the second study (6) lacked the methodological rigors of research of this kind. Moreover, the directionality of these associations was unclear.

I admire the spirit of these efforts, but their focus may be problematic, even if more methodologically sound research shows some benefits of diagnostic relabeling. First, diagnostic relabeling may focus stigma change within the mental health professions and not among people with lived experience. The professions might be a good place to start, given that the attitudes of mental health professionals are among the most stigmatizing of those held by workers in various trades, careers, and vocations (7). Many psychiatrists, for example, endorse stereotypes about mental illness, including dangerousness and incompetence, or do not believe that recovery is a legitimate model for the treatment of people with serious disorders such as schizophrenia (8). Unfortunately, this is a perspective that continues to be actively touted in the literature. Torrey (8) has argued that stigma is warranted given the violence that emerges among people with schizophrenia who become aggressive.

Diagnostic relabeling as an approach to stigma change entangles the issue in the medical perspective rather than freeing it from psychiatry. For some psychiatrists, a change in the diagnostic name of schizophrenia is linked to a change in the prognosis they endorse: “lasting recovery if treated with therapy and psychosocial care” (2). This finding suggests that recovery can be achieved and stigma can be lessened when the practitioner follows these treatment prescriptions. Therefore, rectifying stigma’s egregious effects becomes centered in the profession. However, antistigma efforts focused on the profession miss the true target: the people with lived experience who are the object of stigma. They are the most motivated to change stigmatizing language and attitudes, and they should be the leading force in these efforts. It was people of color—not well-intentioned outside groups—who tore down racism. Similarly, people with lived experience who champion antistigma agendas will have the biggest and most lasting impact on stigma change (9).

Second, a focus on diagnostic relabeling shows misunderstanding of the endurance of prejudice and discrimination. Whether people with serious mental illness are given a diagnosis of schizophrenia or a more benign and informed label, such as integration disorder, they are still labeled. The person is still marked as different. The harm of stigma arises from both the mark and the difference. Social scientists note that racism did not disappear because, for example, most people use the term “African Americans.” “Modern racism” is the well-documented phenomenon in which obvious forms of discrimination disappear (10)—for example, media professionals, politicians, marketing experts, and business people no longer use egregious terms. Discrimination continues, however, in subtle forms, such as opposition to busing of elementary school students or to affirmative action. In the health care arena, changing the name of leprosy to Hansen’s disease did not lighten prejudice and discrimination in regard to people with that disorder (11). I do not expect that changing the diagnosis to integration disorder will lessen the discrimination that individuals experience from landlords, employers, and legislators.

The focus on diagnostic relabeling might also misrepresent the direction between language and stigma. The word “schizophrenia” is not what leads to stigma; stigma is what causes shame as a result of the schizophrenia label. Changing diagnostic terms for serious mental illness in Japan might yield short-term effects, and the population may view the condition with less stigma. But eventually, pairing a new term with a condition that continues to be stigmatized by a culture will eventually stain that term too.

Third, promoting diagnostic relabeling may make stigma change seem easy: all we need to do is change the words. Advocates of all stripes—mental health providers and people with lived experience—know that erasing stigma is not an easy task. Believing that stigma change is easy has consequences. Funding bodies such as the National Institute of Mental Health vary their priorities, and support for research on stigma has waxed and waned over the past decade. Professional groups opine that it is time to leave the agenda of antistigma programs behind (12). Diagnostic relabeling encourages “word police,” who prod media outlets and others to improve their language. However, research shows that protest efforts rarely diminish stigma and sometimes even worsen it.

Changing attitudes about race and sexual orientation grew from grassroots efforts conducted by rainbow coalitions that have continued for decades and are not likely to end soon. Although Clifford Beers, a person with lived experience and founder of what is now known as Mental Health America, was actively promoting mental health services as a social justice issue in the early 1900s, efforts to tear down the prejudice and discrimination that surround mental illness are a relatively recent phenomenon. Therefore, all movements to challenge the pernicious effects of stigma are important. But we must be critical when pursuing these goals and realize that although diagnostic relabeling might seem like a good idea, it may yield little meaningful change and may distract us from more effective strategies. This is a research issue, and future investigations should examine how diagnostic relabeling complements other approaches to stigma change.

The author reports no competing interests.