Mad in America have a post titled "Stigma Associated with Labeling, Not Behavior", which links to a paper reporting a study conducted by some of my colleagues at CUNY. Unfortunately the post is short and does not discuss the content of the study or its implications for the relation between diagnosis and stigma. The paper itself is stuck behind a paywall, so many people who might be interested won't have access to it. This post is a detailed look at the study and its implications for diagnosis.
What would you think if you read the following description?:
"John is a shy 18-year-old, white, male high school senior who was doing fine until about 6 months ago, with close friends, an A to B average in school, and an interest in movies and basketball. In the past 6 months, John began to stay up most of the night and sleep during the day, showering less and withdrawing from friends and family. John began to feel as if people in the neighbourhood were looking at him more, which made him uncomfortable. When nervous, John sometimes thought he heard his name in the wind, and late at night he sometimes briefly felt a presence even though no one was there. John is interested in politics and is preoccupied with thoughts about the influence of television and mass marketing on people. In the past month, John has sometimes refused to go to school and spends most of his day alone in his room.
In terms of his family, John’s mother was hospitalized 25 years ago for a mental illness, which she promptly recovered from and which has never returned."
This is a vignette which Anglin and her colleagues presented to the undergraduate students participating in their study. They did not provide an explanatory label in the description, but instead asked their participants "What label would you use to describe John?" Alongside this question, they also administered questions from the "Attribution Questionnaire", a measure of fear, avoidance and perceived danger in relation to mental health in which higher scores indicate a greater degree of each. This was their measure of stigma. You can read the questionnaire for yourself on page 10 of this document.
The researchers then grouped the labels provided by their participants into "labels associated with psychosis" (i.e. "paranoia", "mentally ill", "crazy"); "labels associated with other non-psychotic diagnoses" (i.e. "depressed", "anxious", "bipolar") and "non-psychiatric labels" ("afraid", "confused", "weird"), which allowed them to compare the type of label provided with the extent of the stigma. This is the results table from the paper that reports the study:
Several interesting things emerge. The first is that when statistical analysis was conducted, only one of the reported differences was found to be significant (in the sense that there was a less than 5% probability that it could have emerged by chance alone): the difference between "Psychotic-like" labels and "Non-diagnostic" labels on the dimension of "Fear", which suggests that people feel more fearful of those they think of as "Psychotic" than those they don't, even when their behaviour is the same. This is important. I have previously argued that opponents of diagnosis need evidence to validate their claim that stigma is caused by the label and not the behaviour. This result certainly contributes to that evidence.
However, the negative findings (those differences that were found not to be significant) are just as interesting for the debate. It is notable, for example, that the increases in stigma are associated with "Psychotic-diagnostic labels" rather than diagnositic-labels per se. This suggests that, contra to the over-general Mad In America headline, while some diagnoses are stigmatising (those associated with psychosis), others may in fact be relatively benign. Perhaps (and I am speculating here) while "psychosis" or "Schizophrenia" are confusing terms which cast little light on a person's predicament, other labels like "depression" or "anxiety" help us to understand other people's situation and act as protective mechanisms against stigma.
I want to flag up another limitation, the implications of which cannot be examined without further research. The 3 categories here were determined by the researchers, which means that we need to pay attention to what terms are included if we are to know what constitutes a "diagnostic label" and what doesn't. Of all the separate labels spontaneously provided (33), only one person came up with "Schizophrenia", whereas 11 used the term "paranoid". These two were grouped together with the following to create the "Psychotic-diagnosis" label category:
"inherited mental illness, mentally ill, crazy, nervous breakdown, suffering from mental illness, mentally unstable".
This means that when we say "stigma is associated with labelling" the sort of labelling under discussion is not straightforwardly the sort of labelling conducted by a clinician making a diagnosis. A doctor may very well tell John that he is "paranoid", "Schizophrenic" or "suffering from mental illness", but the word "crazy" is not used anywhere in the DSM and ought not be used by psychiatrists. To better understand the stigmatising effect of diagnostic labels if would be useful to run a different version of the study where "crazy" is put in a different category.
Another issue is that stigma itself is complex and does not straightforwardly map on to the measure used by the researchers. In other words, even though we can be interested in stigma as measured here, the question of what we mean by stigma is still up for grabs. I raise this because among the non-diagnostic labels that are regarded as protective from stigma are:
"disturbed, enclosed, isolating from the people around her, loner, troubled, weird, gradually becoming antisocial"
None of which are particularly flattering in themselves, even if they do appear to be creating less fear among those generating them. If I refer to John as "weird" or a "loner", is there not a sense in which I am already stigmatising him?
This fascinating study does indeed suggest that certain sorts of diagnostic term contribute to stigma, but the picture is also more complicated than it first appears, and it is certainly more complicated than Mad In America gives it credit for.