Living with a mental health condition like schizophrenia or depression is difficult, but for many people living with mental health conditions, the negative perceptions and behaviours that arise in others and yourself are even worse.
“I live with schizophrenia. It is amazing how people react the moment they just hear the word – they immediately take a step backwards,” says Charlene Sunkel, founder of the Global Mental Health Peer Network and co-chair of the Lancet Commission on Ending Stigma and Discrimination in Mental Health. “They are afraid of you because of this whole false perception that we are dangerous, we are unable to think, unable to work – that we are basically useless.”
Stigma is far from just negative attitudes – discriminatory behaviours are equally important to consider – which is why many prefer to use “stigma and discrimination” together.
Sir Graham Thornicroft, Professor of Community Psychiatry at King’s College London and other co-chair of the Lancet Commission, helpfully illustrates this through a phenomenon known as “diagnostic overshadowing”.
“Let’s imagine that a person who has depression develops severe pain in their stomach. They go into an emergency department. The doctor looks at the patient’s case records, sees that they have depression, and says, ‘It’s all in your mind’. On this occasion, it’s actually an appendix that’s about to burst, which could be a fatal complication.”
He admits this is a dramatic example, but it helps define the stakes – stigma can be an issue of life or death.
Stigma is the biggest barrier to thriving
Charlene and Graham entered the world of stigma reduction from different perspectives – Graham as care provider, Charlene as care user.
Graham entered through his work as a psychiatrist and researcher, recognizing that what separated psychiatry from other areas of medicine was the problem of stigma. A diagnosis could follow a person well beyond their interactions with health services, both in the form of negative attitudes or prejudice (“I don’t want to be around this person, they are dangerous”) and misinformation (“You can’t recover from depression”).
Prejudice and misinformation can in turn lead to discrimination, both at the interpersonal level (public stigma) and in laws and policies (structural stigma). Stigma has also been cited as a reason that mental health services receive less funding and are considered less prestigious than other health services in many countries.
People may also internalize stigmatizing beliefs (self-stigma), which can lead to poor self-esteem and “why-try syndrome” – not engaging in activities that are important to their livelihood, such as applying to university, because they believe they will fail.
Charlene entered the field through her experience of living with schizophrenia. “I was told that I’d never be able to work. I was also constantly in hospitals experiencing the abuse within the system in South Africa. It was when I started speaking to fellow peers that I began to realize that stigma is probably the biggest barrier for us to really gain our life back and thrive.”
What does the evidence say?
Graham and Charlene worked with 42 other researchers and people with the lived experience of mental health conditions to produce, in 2022, the Lancet Commission on Ending Stigma and Discrimination in Mental Health. This umbrella review of 216 systematic reviews, interspersed with poems from people living with mental health conditions, summarizes the best available evidence on what it takes to reduce stigma and discrimination.
Stigma is often framed in terms of mental health literacy. By correcting misinformation about mental health conditions, the theory goes, you reduce prejudice and make it less likely for someone to discriminate.
The problem is that correcting knowledge does not necessarily reduce prejudice; “The evidence is extremely weak,” Graham says.
“Awareness-raising activities are not enough to tackle the problem,” he continues.
According to the Lancet Commission, the best way to reduce stigma is through social contact – prejudice-reducing interactions between people living with mental health conditions and people without a condition.
While social contact may involve correcting misinformation, the focus is on changing attitudes and improving behaviour. Often, this involves having someone share their experiences of living with a mental health condition, balancing frank descriptions of past suffering with clear demonstrations of recovery and resilience.
It does not even need to be in person – there is increasing evidence that virtual contact can be just as effective, including positive and accurate portrayals of people with mental health conditions in film.
“Social contact can allow the target group to attach more agency to the person with a mental condition and show more empathy towards them,” says Graham.
People living with mental health conditions who are trained in social contact are often called “experts by experience”. It is important that these experts also lead anti-stigma initiatives, as it can make such initiatives more tailored to the context and ultimately more effective. Social contact tends to have greater impact in reducing prejudice when the person sharing is of relatively equal status to the audience.
“We have so much value to add because of our experiences,” says Charlene. “It’s not something you can study. We bring that value of practical solutions.”
So, what is being done?
The Lancet Commission provides 8 recommendations for various stakeholders, including WHO, on what to do to reduce stigma and discrimination. Both Graham and Charlene have been working to implement these recommendations.
Charlene, along with the advocacy organization she founded in 2018 called the Global Mental Health Peer Network, has taken ownership of recommendation 8 – developing funded programmes for people with lived experience. The Global Mental Health Peer Network aims to empower people living with mental health conditions to break down stigma in their communities and countries by providing them with a peer community and training opportunities.
Charlene says, “If there’s one solution to resolving stigma, it’s inclusion of people with mental health conditions in everything – in employment, education, communities. By including people, others can see it’s another human being, deserving of dignity and human rights”.
Graham and other researchers in King’s College London have partnered with WHO/Europe and members of the Global Mental Health Peer Network to fulfil recommendation 2 – developing a toolkit to reduce stigma and discrimination in mental health.
The toolkit, called the “WHO MOSAIC toolkit to end stigma and discrimination in mental health”, provides practical, step-by-step guidance on how to set up anti-stigma initiatives based on principles of social contact, co-leadership by people with lived experience and meaningful collaboration. It aims to be useful for individuals as well as groups and organizations.
The toolkit is undergoing expert consultation, being most recently presented to participants of the “Workshop on leadership and service transformation in mental health” in Brussels, Belgium on 22–23 May 2024.
The toolkit will be launched on 10 October 2024, World Mental Health Day.