by Gregory S. Chasson, PhD, & Sage Bates
This article was initially published in the Spring 2018 edition of the OCD Newsletter.
Stigma surrounding obsessive compulsive disorder (OCD) has been the subject of many discussions. However, it is important to recognize that there are different forms of stigma, and to talk about how each of these different types of stigma may affect individuals suffering from OCD and hoarding disorder (HD). In order to investigate this further, our research team at Illinois Institute of Technology recently completed a study to measure the degree of “public stigma” and “self-stigma” associated with both OCD and HD. Our second question was whether stigma might prevent those affected from seeking treatment (Chasson, Guy, Bates, & Corrigan, 2018).
Understanding the Different Types and Levels of Stigma
Public stigma develops from the general population’s beliefs in stereotypes about a group, resulting in prejudice and discrimination. For example, the public might mistakenly think all people with OCD are concerned with germs, and this stereotype could cause a cleaning company not to hire a job candidate who has disclosed her OCD.
When an individual suffering from a condition such as OCD or HD then internalizes these public views, this is referred to as self-stigma. For example, a person with hoarding disorder may start to accept a stereotype that all people with hoarding are “just lazy.” This stereotype then becomes a part of his identity. He may even start to think that he cannot remove clutter or pursue treatment because he’s “just lazy.”
It is possible that self-stigma, and specifically concerns about prejudice and discrimination, may then cause individuals to avoid places where they may be assigned a label (e.g., avoiding a mental health treatment center to prevent being “labeled” as mentally ill or as someone with a diagnosis of OCD). Thought of in this way, stigma can actually prevent those with OCD or HD from seeking treatment (Corrigan, 2004).
In addition to public and self-stigma, we were interested in three additional levels of stigma in relation to OCD and HD:
- Difference (“They aren’t like me”)
- Disdain (“They are bad”)
- Blame (“They are to blame”)
For this study, we compared public stigma of OCD and HD to other groups commonly associated with negative public perception and discrimination. These comparison groups included:
- individuals with serious mental illness (SMI); for example, schizophrenia;
- individuals with substance use disorders (SUD); and
- individuals in jail.
We expected that public stigma of HD would be worse than OCD given the positive movement by organizations such as the International OCD Foundation (IOCDF) to reduce OCD stigma. In addition, we believed that the recent influx of reality TV programs, which typically negatively portray HD, would result in increased public stigma. Generally, we also anticipated that stigma of HD (but not OCD) would be similar to some of the stigma profiles of the stigmatized comparison groups (i.e., SMI, SUD, and jail).
We recruited an online sample of 591 adults in the United States. The sample was 49.7% male, 86.49% non-Hispanic White, and aged 37 years old on average. Each participant answered questions about stigma for the five groups: OCD, HD, SMI, SUD, and jail. We also asked questions about demographics, family and psychiatric history, and familiarity with the conditions (for example, does the participant have a family member with OCD). In order to measure self-stigma, participants also completed commonly used self-report measures of OCD and HD symptoms. Those who scored high were then prompted to answer an additional question about their willingness to seek treatment for their symptoms.
The study confirmed our hypothesis that HD was a more stigmatized disorder than OCD. The results showed that OCD was generally viewed in a neutral or positive way, suggesting that public stigma of OCD is not overly pronounced.
Additionally, OCD was viewed with less blame and disdain relative to all of the comparison conditions, with the exception of SMI. When compared to SMI, OCD was associated with more blame but significantly less difference. In other words, individuals with OCD are perceived as more responsible for having their condition compared to SMI. And, though a strong belief in biological causes of SMI may reduce blame (e.g., “it’s not your fault that your brain is sick”), it coincides with an increase in difference (e.g., “your brain is sick, and mine is not”).
Unlike OCD, stigma ratings for HD leaned in the negative direction. Compared to OCD, HD was viewed with more difference, disdain, and blame. While those who had a friend or family member with HD (familiarity) indicated feeling less difference towards those with the disorder, they also reported feeling higher disdain and blame, suggesting more pronounced stigma.
As with OCD, when compared to SMI, HD was associated with less difference but more blame. However, HD was seen with less disdain and blame compared to jail and SUD, both of which are notoriously associated with public views of immorality. Ultimately, the public sees HD in the middle ground between (a) SMI, which is perceived to have little control over symptoms because of biological causes, and (b) conditions that are perceived to coincide with more control and immorality, and fewer biological causes (i.e., jail and SUD).
For the 24 participants who reported high levels of HD symptoms, the more they endorsed self-stigma, the less willing they were to seek treatment for those symptoms. This is a preliminary indication that individuals with HD symptoms may avoid treatment because of internalized public stigma. This was not the case for OCD stigma, which was not correlated with a willingness to seek treatment.
The study was constrained by an Internet sample that was limited in ethnic and age diversity, and there were no gold-standard diagnostic evaluations to confirm HD and OCD diagnoses in the participants who reported elevated symptoms. Nonetheless, this was the first systematic investigation of various components of stigma, and the first study of public stigma of HD.
Findings on OCD stigma were generally encouraging and suggest that public views may have shifted in a positive direction, perhaps because of efforts by organizations like IOCDF, to fight OCD stigma. In comparison to those with SMI, there are indications that the public still has some blame beliefs about OCD. Future efforts to educate the public on the biological causes of OCD may reduce blame. However, overemphasizing biological causes may also result in an increase in difference beliefs.
Unlike OCD, findings for HD were less encouraging and indicate that the public feels a relatively strong stigma toward the condition. This may be due to a lack of education as well as an influx of inaccurate portrayals on reality television. Given these findings, organizations that target stigma of OCD conditions can consider shifting some resources specifically to address HD stigma.
While there has clearly been some progress in fighting OCD stigma, these results serve as a reminder that it is important to also invest resources in related conditions like HD. It is often a challenge to motivate individuals with HD for treatment, and perhaps self-stigma is one reason for this lack of engagement. Targeting stigma for HD might remove an important barrier to treatment and encourage more of those affected to seek help.
Chasson, G. S., Guy, A. A., Bates, S., & Corrigan, P. W. (in press). They aren’t like me, they are bad, and they are to blame: A theoretically-informed study of stigma of hoarding disorder and obsessive-compulsive disorder. Journal of Obsessive-Compulsive and Related Disorders.
Corrigan, P. (2004). How Stigma Interferes With Mental Health Care. American Psychologist, 59(7), 614-625.