Have We Been Getting Schizophrenia Wrong?
Our popular conceptions are shaped more by stigma than science.
Posted November 19, 2018
There are no death sentences in psychology, but that doesn’t mean that all diagnoses are created (or received) equally. Depression and anxiety have not entirely shed their stigma, but both conditions are sufficiently mainstream that disclosing one has either or both of them is often treated as unremarkable. Other conditions, though, remain misunderstood, scary, even perceived as dangerous. Foremost among these is schizophrenia. Depression may darken one’s world but with rare exceptions one still perceives the world in much the same way as the unafflicted; psychosis works much differently.
According to the DSM-5, schizophrenia almost always emerges somewhere between the late teens and the mid-30s, typically in the early-to-mid 20s for males and the late 20s for females. I treat a few young men in the early years of the disease, and I must admit the work is tough; I can’t help but think about the relatively carefree life I was living at their age and mourn what they have lost. But is this fair? The more their treatment progresses, the more amazed I am at their progress and the more I am forced to consider the lingering impact of stigma within my own approach.
Recent studies have challenged the received wisdom that schizophrenia is a steadily downward progression. As recounted by psychologist and researcher Patrick Corrigan in The Stigma Effect, a longitudinal study he and others conducted found that schizophrenia operates by a rough rule of thirds: Around one-third of people with the diagnosis seem to recover after receiving intensive short-term care. Another third needed more long-term monitoring, usually combining medication with behavioral interventions. The final third remain symptomatic, but only 11 percent of the entire study population demonstrate the stereotypical pattern of steady disintegration.
Usually when working to destigmatize a schizophrenia diagnosis with patients, I will point to people who are successfully navigating the disease such as Elyn Saks or Esme Weijun Wang. I still believe this is helpful, but individual examples only get you so far. What more can we do to help those both confronting the diagnosis as well as the general public?
It starts with challenging some of our preconceived notions. As Corrigan points out, given the prevalence rate of schizophrenia (0.8 percent), roughly 80,000 people with schizophrenia live in our shared hometown of Chicago. That’s about the entire population of the mid-sized central Illinois city where my family now lives. Much of that number is not visibly symptomatic, meaning that in a large metropolitan area we all encounter people with schizophrenia on a daily basis without realizing it.
Corrigan reviews a few of the most popular approaches to ending stigma—advocating for the rights of those with mental illness (either on their behalf or from their community), educating the general public on the diagnosis, and having contact with those who have schizophrenia. The last option is the one that has the most impact, and this makes intuitive sense. Many people my age or older have at some point in their lives changed their opinion on gay marriage, and chances are most of them changed their minds not because of seeing a protest march or reading a story in the news (although both clearly have value and are needed) but rather by knowing someone who helped personalize the issue. Dissolving mental illness stigma should proceed in much the same way.
I find Corrigan’s research and argument persuasive, but I must admit I still struggle with this approach because it seems to place a greater burden upon those with schizophrenia. The same could be said of the LGBTQ community; it took relatively prominent people like Ellen DeGeneres coming out of the closet for many to feel comfortable following their lead, and those who came out first often faced much greater discrimination and abuse than those who came later. Corrigan practices what he preaches by including the story of his own mental health struggles alongside his work on stigma, and he takes great pains to account for both the pros and cons of transparency. Hopefully, others will be brave enough to follow the lead of Corrigan, Saks, and others, but those of us with lived experience must work that much harder to create environments capable of sheltering such honesty. Policies need to be addressed, of course, but I think it should begin much smaller at the personal level, from the words we use to the way we treat the person talking to himself on the bus. Those small interactions broadcast your values to those around you, including those who may still be silent, and let them know whether or not you can be an ally.
Corrigan, P.W. (2018). The Stigma Effect: Unintended Consequences of Mental Health Campaigns. New York, NY: Columbia University Press.