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Grace Zupke

English 1201

Dean Leonard

1 May 2021

Reducing the Stigma of OCD and Mental Illness

People who joke about obsessive-compulsive disorder (OCD) tend not to understand that

it is a mental illness and that people really suffer from it. Most people think of clean freaks,

counting, or even the hilarious Christmas meme (Obsessive Christmas Disorder) when, in reality,

OCD is not the least bit funny, and people suffer from it every day. Most people do not realize it

is a struggle from the moment someone with OCD gets up until they lie down at night. Fear and

sadness can make them scared to step out of their comfort zone and afraid to be themselves. It

makes it hard to have and keep relationships, making everything seem like all hope is lost. I was

diagnosed with OCD in 2008. Having a legitimate reason for all the struggle I had been going

through gave me at least a little peace of mind but, being so young, I did not understand what

having OCD really meant. I was afraid to tell my friends and extended family and tried to act

"normal" by hiding my anxiety and compulsions for years. I was afraid they would love me less

and push me away. It turns out that this is a very typical response due to the stigma associated

with mental illness. Stigma can make people feel alienated or not as important as others, they

fear they will be viewed negatively if they share their story, and it prevents people from seeking

help for symptoms. If for no other reason than to ensure more people will seek treatment when

needed, the stigma of OCD and mental illness must be reduced. Successful approaches to

reducing the stigma of OCD, and all mental health illnesses, must address discriminatory

practices and policies at the institutional, societal, and individual levels.

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Mental illness stigma starts with labeling. An individual with a mental health condition

gets labeled either according to their diagnosis (e.g., schizophrenia, OCD, etc.) or something

more derogatory (like crazy or psycho). Mental health advocate Patrick Corrigan says that

society creates stigma. Roy Richard Grinker, cultural anthropologist and autism expert at George

Washington University, agrees when he says, "stigma is a social process that can be explained

through cultural history" (330). In other words, the labels and the resulting stereotypes are

created by society. According to Ava Casados, Ph.D. candidate in clinical psychology at Yale

University, the stereotype for adults labeled as mentally ill includes the person being out of

control, incompetent, untreatable, and even physically dangerous (qtd. in Casados). These

stereotypes result in an "us" vs. "them" division, leading to social separation and ultimately

discriminatory practices and policies.

According to the National Alliance of Mental Illness (NAMI), twenty percent of adults

(one in five) experience mental illness each year, and 1.2% of U.S. adults (2.6 million people)

experience OCD each year. Of the people with a mental illness, nearly 40% of adults and 50% of

youth (age 8-15) do not seek treatment, and mental illness stigma is a significant reason. NAMI

also reports that the average delay in getting treatment for mental illness, from onset to

treatment, is 11 years, and the fear of stigma is one of the most significant causes for the delay.

Other barriers to timely treatment are lack of knowledge about mental healthcare, not

recognizing symptoms, and not identifying adequate healthcare resources for the symptoms.

Even when a person is courageous enough to seek treatment for a mental illness, they can be

subject to professional stigma, which can occur when professionals (from a range of health

fields) stereotype psychological disorders. Even though these providers are well-trained, they
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typically see people only when they are in crisis, reinforcing the stereotypes about people with

mental illness being overwhelmed by symptoms and out of control.

For those individuals who do seek treatment, some choose to go through the treatment

process alone because the diagnosis leaves them feeling shame, guilt, fear, and anxiety. Fear of

how they will be perceived and treated often prevents individuals from sharing information about

their illness even with relatives and close friends. They are left without the proper support

needed during the treatment process. As with any illness, proper support during treatment is

essential.

In addition to the harmful effects of symptoms and disabilities resulting from the illness

itself, individuals with OCD and other mental health conditions also struggle with society's

negative attitudes and stigmatizing behaviors. Mental illness symptoms alone (including low

motivation and self-esteem) can cause individuals to retreat into their own little world. Feeling

stigmatized can cause individuals to withdraw even further from society, aggravating

psychological symptoms and discouraging treatment adherence. Patrick Corrigan, Professor and

Associate Dean for Research in the Institute of Psychology at the Illinois Institute of

Technology, has lived with serious mental illness. He shares his experience with stigma, saying,

"the course of my mental health experiences was worsened by having to deal with the world

around me, and its messages of disapproval, shame, and secrecy (Corrigan xviii)." As described

by Collins et al., people with mental illness internalize prejudice, negative views, and degrading

attitudes about mental illness, believing them to be entirely true. Self-stigma is often referred to

as a "second disease" and leads to low self-esteem, self-blame, and a host of other negative

emotional states (Collins et al. 3).

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Societal and institutional attitudes and prejudice toward mental illness have led to

discrimination. Rebecca Collins, chair of the RAND Human Subjects Protection Committee and

a senior behavioral scientist at the RAND Corporation confirms that people with mental illness

commonly report negative experiences with employers, landlords, and the police or socially

excluded potential friends (Collins et al. 1). Corrigan has experienced this discrimination

firsthand while running an aftercare service for serious mental illness at the University of

Chicago. During the time he ran the aftercare program, he saw program participants learn to

manage their symptoms and impairments and become ready to get a job or live independently.

Unfortunately, employers did not want to hire people with serious mental illnesses, and landlords

did not want to rent to them. The community was the barrier to recovery, not the individuals

themselves (Corrigan, xvii).

Reluctance to hire or rent to people with serious mental illness are examples of

institutional practices that discriminate against those with mental health issues. Sue

Abderholden, Executive Director of NAMI Minnesota, explains the impact of institutional

stigma. She said the word "stigma" doesn't adequately describe what people with mental illness

experience. She says it is actually discrimination that has resulted in people with mental health

issues waiting for days in emergency rooms. It is discrimination when health insurance does not

cover mental health treatment. It is also discrimination that causes so many with mental illness to

be unemployed or end up in the criminal justice system (Aberholden 2019). Hospital practices,

health insurance coverage policies, and the criminal justice system (where people with mental

illness experience higher incarceration rates) are examples of the institutional level that must be

addressed if stigma reduction efforts to be successful.

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The most common approaches to reducing the stigma of OCD, and mental illness in

general, have been education, contact, and protest. These approaches are interrelated and often

used together, but few efforts are scientifically proven to produce significant, quantifiable, and

lasting change. It is essential to carefully consider approaches that have been proven successful

and consider them in targeted interventions for society, institutions, and individuals.

One of the most common approaches used to reduce mental illness stigma is education

(Casados, 308). Education approaches aim to provide factual information to counter

misinformation and stereotypes. Examples of educational interventions are public service

announcements using various methods (e.g., slides before movies in theaters, pamphlets, and

billboards) or workshops (e.g., high school program or job training). It would be reasonable to

assume that educating the population about mental illness myths and facts would help reduce

stigma. California educational interventions in secondary schools have produced some positive

outcomes on attitudes and knowledge (qtd. in Collins et al. 10), but Casados says the effects have

limited reach and longevity. According to Corrigan, education has not proven to "diminish

prejudice that the "normal" majority has against those with mental health challenges" (189).

While education approaches may have limited success on stigma, it does help increase mental

health literacy and should be considered when developing a stigma reduction intervention

strategy.

The contact approach to reducing stigma refers to interacting with a person with lived

mental illness experience. An example of the contact approach is NAMI's "In Our Own Voice"

(IOOV) program, where people with lived experience talk about what it is like to have a mental

illness. The idea behind this approach is that, by interacting with a person with mental illness, the

person without mental illness has an opportunity to rethink their own stereotypical beliefs about
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mental illness. There are several considerations with this method, including that contact is more

effective when it's voluntary and informal and that the person with mental illness should be seen

as representative of the population of people with mental illness (Casados 311-312). This is why

sometimes celebrities who disclose their mental illness do not necessarily positively impact the

public perception about mental health since people may not believe the celebrity's mental illness

is typical of the general population who have the condition. Half the population will have some

type of mental illness in their lifetime (NAMI), so every person will likely come in contact with

someone with mental illness. However, the mental illness may not present itself in the

stereotypical way expected, so individuals might not be aware when interacting with a person

with mental illness. It is possible only severe (stereotypical) cases may be recognized, and the

very stereotypes we want to eliminate will be further reinforced. Even considering these potential

influencers to the contact approach, attitudes about mental illness are significantly more positive

when the person has had contact with someone who has a mental illness (Casados 310).

Collins et al. agree with Casados when saying, "Evidence suggests that fostering

interactions with persons with mental illness may have an even greater impact on attitudinal

changes than educational or protest strategies" (11). Similar to how attitudes have changed about

the LGBTQ through contact as straight and gay communities have interacted, attitudes about

mental illness can also change through person-to-person contact. Corrigan has some powerful

words about this approach:

"Contact does more than just erase the negative. Contact promotes the positive where the

straight community experiences the depth and breadth of values and heritage among the

gay community. Together, this kind of contact replaces prejudice and discrimination with

affirming attitudes and behaviors (156)."

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Corrigan believes that supportive attitudes will replace stigma when the majority of "normal"

people interact with people with mental illness as equals. The key is for people with mental

illness to disclose their illness, and this is not without risk as individuals who disclose their

mental illness open themselves up to the threat of discrimination. Though there are many aspects

to consider with the contact method, Casados agrees it is promising (Casados 314). Also, other

studies confirm that the benefits are great, as verified by a review that summarized seventy-nine

studies where results showed benefits for contact were two to three times greater than for

education (qtd. in Corrigan et al. 159). This evidence strongly suggests that contact must be a

significant component of any intervention strategy to reduce the stigma of OCD and mental

illness.

The third common approach to reducing stigma is protest or social activism. This

involves publicizing and speaking out against instances of prejudice or discrimination. Some

forms of protest are writing letters, conducting marches, and boycotts (Casados, 309). A

prominent example of protest is StigmaBusters, an online community hosted by NAMI, which

campaigns to remove stigmatizing representations or content from media. In 2000, the group

addressed producers of an offending television program, "Wonderland." When the producers did

not respond, NAMI targeted the commercial sponsors of the program, organizing boycotts of the

sponsors' products. This ultimately resulted in the offending show being pulled off the air.

However, there is no evidence that this type of change influenced the public's view of mental

illness. Also, protests have had some unintended consequences. For example, some attempts to

instruct people not to think bad things about a group make the group's attitudes worse (Corrigan

117). This is similar to trying not to think about something, which actually increases the thought.

For example, if a person is told not to think about some kind of food they enjoy, it is very likely
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the person would not be able to not think about that type of particular food. Corrigan is sure that

anti-stigma programs need to be led by people with lived mental illness experience, not by their

allies (Corrigan 190). Collins et al. agree that contact with people who have mental health issues

is a must in any intervention effort.

Collins et al. also argue that efforts to reduce mental illness stigma will be most effective

when tailored to specific populations, are locally based and delivered, and ongoing. Corrigan

agrees with Collins et al. saying that, because stigma is a social construct, each social group is

likely to experience change differently (191). In some cultures, celebrities who share openly

about their mental illness can have a positive impact. For example, when Prince William and

Prince Harry openly discussed the emotional challenges they faced after Princess Diana's death,

and during their time in the armed forces, it paved the way for many others to admit they

suffered mental illness openly. However, this approach won't work everywhere since several

places in the world do not have a celebrity-focused culture.

Producing change in deeply ingrained attitudes and behaviors like mental illness stigma is

not easy. According to the model of change proposed by Collins et al., shown in Fig.1,

successful approaches to Stigma and Discrimination Reduction (SDR) will require interventions

targeted at multiple, mutually reinforcing levels: individual, societal and institutional.

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This model of change to reduce mental illness stigma shows how the individual, societal

and institutional (policies/practices) are all connected. All three levels influence and are

influenced by each other. Societal views and attitudes about mental illness can lead to

discriminatory practices, and those practices can influence society's views and attitudes about

mental illness (positive or negative). Societal and institutional views and attitudes can impact

individuals' self-image and treatment-seeking behavior.

One might ask if all levels are interrelated, where does the intervention start? This may

seem like the age-old question, "What came first, the chicken or the egg?" Corrigan believes it

begins with people who have mental illness disclosing their illness. He says, "[t]he atomic bomb

to erase stigma is to come out" (190). However, as more people bravely disclose their illness,

society must be better prepared to accept and understand. This means educational efforts must be

well thought out, locally based, and ongoing. There is an excellent opportunity to broaden

awareness and education during the pandemic since more people are experiencing mental health

issues than ever before.

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Sharing facts alone won't be enough, but awakening society to the possibility that their

loved ones, friends, and neighbors may have a mental health issue that they are silently

struggling with might make a difference. A growing understanding throughout society that not

all people with mental health issues are dangerous and out of control will encourage more

individuals to bravely "come out." As society interacts with people with mental illness more

often, negative attitudes and exclusionary behaviors will begin to go away. When this happens,

more individuals will be willing to seek treatment, improving their chances to live a "normal"

life. In turn, this will reinforce a more positive perception in the community, and media portrayal

will be more positive. As individual and societal behaviors become more positive, protest

activities may be more impactful, helping change laws, practices, and policies. Private and public

organizations will do more to educate their workplace and to ensure diversity and inclusion

efforts include mental illness, changing policies and practices to ensure real change. Education

and protest interventions that may have had limited success in the past will have more impact

when combined with the contact approach in an intervention tailored for the local community in

ongoing campaigns. A positive cycle of change can be reinforced, but only if the individual,

society, and institutions are part of the plan. Because the institution, society, and individual

levels all influence one another, approaches will be successful only to the extent that they are

targeted at all levels. (Collins et al. 7).

From personal experience, I can confirm that telling people about my OCD or other

mental illness does feel like "coming out." It takes a lot of courage and strength to say to people I

have a mental illness because of the stigma surrounding it. Stigma can cause people to feel

ashamed for something they have no control over. Stigma can prevent people from seeking

treatment or getting timely and proper treatment and can prevent employment. It can lead to
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isolation and reduced quality of life. Stigma is simply an unacceptable additional pain for people

already carrying a heavy burden. For the families of loved ones with OCD and other mental

illness, it is heartbreaking to watch them struggle, not only with their illness but also with the

limitations caused by the negative perceptions of society. It is essential to make more rapid

progress in reducing the stigma of OCD and mental illness. Intervention approaches must

address attitudes, practices, and policies at the society, institution, and individual levels. Grinker

argues that stigma is a social process and, because humans create the exclusions, we ultimately

have the power to change (330). It won't be easy, but as someone who has OCD, I understand

how important it is to change the stigma of OCD and mental illness.

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Works Cited

Abderholden, Sue, "It's Not Stigma, It's Discrimination." NAMI, www.nami.org/Blogs/NAMI-

Blog/March-2019/It-s-Not-Stigma-It-s-Discrimination. Accessed 24 Mar. 2021.

Akyurek, Gokcen, et al. "Anxiety Disorders - From Childhood to Adulthood." IntechOpen,

IntechOpen, 23 Jan. 2019, www.intechopen.com/books/anxiety-disorders-from-childhood-

to-adulthood/stigma-in-obsessive-compulsive-disorder. Accessed 6 Mar. 2021.

Casados, Ava T. "Reducing the Stigma of Mental Illness: Current Approaches and Future 323.

Sinclair Community College Library, EBSCOhost, doi:10.1111/cpsp.12206. Accessed 6

Mar. 2021.

Collins, Rebecca L, et al. Interventions to Reduce Mental Health Stigma and Discrimination: A

Literature Review to Guide Evaluation of California's Mental Health Prevention and

Early Intervention Initiative." 2012. Sinclair Community College Library,

https://kong.sinclair.edu/record=b2021482~S1. Accessed 6 Mar. 2021.

Corrigan, Patrick. "The Stigma Effect: Unintended Consequences of Mental Health Campaigns."

Columbia University Press, 2018. Sinclair Community College Library,

http://sinclair.ohionet.org:80/login?url=https://search.ebscohost.com/login.aspx?

direct=true&db=nlebk&AN=1902205&site=eds-live. Accessed 6 Mar. 2021.

Grinker, Roy Richard. Nobody's Normal: How Culture Created the Stigma of Mental Illness. W.

W. Norton & Company, 2021.

"NAMI: National Alliance on Mental Illness." NAMI, www.nami.org/. Accessed 6 Mar. 2021.