Living with a mental illness such as schizophrenia or depression is difficult, but for many people living with a mental illness, the negative perceptions and behaviors they create towards others and themselves are even worse.
“I have schizophrenia, and it’s amazing how people react when they hear the words: they immediately take a step back,” says Charlene Sunkel, founder of the Global Mental Health Peer Network and co-chair of the Lancet Commission to End Stigma and Discrimination in Mental Health. “They’re afraid of you because of a false perception that we’re dangerous, that we can’t think or work – that we’re basically useless.”
Many people prefer to use the terms “stigma and discrimination” together, since stigma is far from simply a negative attitude and discriminatory behavior needs to be considered as well.
Sir Graham Thornycroft, professor of community psychiatry at King’s College London and co-chair of the Lancet commission, explains this in simple terms through a phenomenon known as “diagnostic shadowing”.
“Imagine a depressed person experiencing severe stomach pain. They are taken to the emergency department. The doctor looks at the patient’s records, sees that they are depressed, and says, ‘It’s all in your mind.’ In this case, their appendix is actually about to burst, a potentially fatal complication.”
It’s a dramatic example, he acknowledges, but it helps make the point clear: stigma can be a matter of life and death.
Stigma is the biggest barrier to prosperity
Charlene and Graham entered the world of stigma reduction from different perspectives, Graham as a care provider and Charlene as a care user.
Graham came to psychiatry through his work as a psychiatrist and researcher and realised that what separates it from other fields of medicine is the issue of stigma: a diagnosis can follow a person far beyond their interaction with health services, in the form of negative attitudes and prejudices (“I don’t want to be around this person, they’re dangerous”) and misinformation (“There’s no cure for depression”).
Prejudice and misinformation can lead to discrimination, both interpersonally (official stigma) and through laws and policies (structural stigma), and stigma is cited as a reason why mental health services are less funded and perceived as less prestigious than other health services in many countries.
People may also internalize stigmatizing beliefs (self-stigma), which can lead to low self-esteem and “why try” syndrome, where people don’t engage in important life activities, like applying to college, because they believe they will fail.
Charlene entered the field after experiencing schizophrenia: “I was told I would never be able to work, I was also mistreated within the South African hospital system and frequently hospitalised. When I started talking to my peers, I began to realise that stigma was the biggest barrier to us really reclaiming our lives and thriving.”
What does the evidence say?
Graham and Charlene worked with 42 other researchers and people with lived experience of mental illness to create The Lancet Commission to End Stigma and Discrimination in Mental Illness in 2022. This comprehensive review, made up of 216 systematic reviews and interspersed with poetry from people living with mental illness, brings together the best available evidence on what needs to be done to reduce stigma and discrimination.
Stigma is often framed in terms of mental health literacy: in theory, correcting misinformation about mental health conditions will reduce prejudice and make people less likely to experience discrimination.
The problem is that correcting knowledge doesn’t necessarily reduce prejudice: “The evidence is extremely weak,” Graham says.
“Awareness-raising alone is not enough to solve the problem,” he continues.
According to the Lancet Commission, the best way to reduce stigma is through social contact – that is, through anti-stigma interactions between people with and without mental illness.
Social contact may include correcting misinformation, but the focus is on changing attitudes and improving behavior. Often this involves inviting people to share their experiences of living with a mental illness, balancing honest accounts of past suffering with clear demonstrations of recovery and resilience.
It doesn’t even have to be in person: There’s growing evidence that virtual contact, like positive and accurate portrayals of people with mental illness in movies, can be just as effective.
“Social contact allows the target group to feel more agency and more empathy for people with mental illness,” Graham says.
People living with mental illness who are trained in social interactions are often referred to as “experts by experience.” It is also important that these experts lead anti-stigma efforts so they can be tailored and ultimately more effective. Social interactions tend to be more effective in reducing stigma when the person sharing the information is on a relatively equal footing with the audience.
“We have a lot of value to add because of our experience,” says Charlene. “It’s not something you can study. We bring the value of practical solutions.”
So what is being done?
The Lancet Commission has made eight recommendations to various stakeholders, including the WHO, on what they can do to reduce stigma and discrimination, and Graham and Charlene are working to implement these recommendations.
Charlene is working on recommendation 8, developing funding programs for people with lived experience, with an advocacy organization she founded in 2018 called the Global Mental Health Peer Network. The Global Mental Health Peer Network aims to help break down stigma in communities and countries by providing peer communities and training opportunities for people living with mental illness.
Charlene says, “If there’s one solution to eliminate stigma, it’s to include people with mental illness in everything – in employment, education, the community. Including people helps others see them as another human being who deserves dignity and human rights.”
Graham and other researchers at King’s College London are partnering with members of the WHO/Europe and Global Mental Health Peer Network to implement recommendation 2: developing a toolkit to reduce stigma and discrimination in mental health.
Called the WHO MOSAIC toolkit to eliminate stigma and discrimination in mental health, the toolkit offers practical, step-by-step guidance on how to launch anti-stigma initiatives based on the principles of social contact, lived-leadership and meaningful collaboration. It is intended to be useful for individuals, as well as groups and organizations.
The toolkit is under expert consultation and was recently presented to participants at the Workshop on Leadership and Service Transformation in Mental Health, held 22-23 May 2024 in Brussels, Belgium.
The toolkit is scheduled to be launched on World Mental Health Day, 10 October 2024.
