It is well documented that systemic racism plays a role in the onset of many physical and mental health conditions. It is a serious issue that continues to play out today. How large a part, I cannot say? It would require a thorough review of the literature. If my readers are so inclined, I would happily write that article another time. However, today I am taking you on a personal journey that led me to discover how cultural stigma affects healing and recovery for a person with a psychotic disorder.
Although much of my research highlights cultural stigma in non-white communities, as a Caucasian woman and a former psychiatric social worker, I can say, stigma or negative beliefs about psychotic disorders are also present in white communities. More so in rural areas of the country where antiquated views can be passed down from generation to generation. The main difference is in Caucasian circles psychosis-related stigma is not part of a larger cultural narrative therefore, it can often be resolved with education. In comparison, cultural beliefs are more embedded and harder to change, especially when the “educator” knows little to nothing of the culture and is from outside the community.
It Could Happen to You, It Could Happen to Me
I used to work as a psychiatric social worker for one of the country’s best tertiary psychiatric care settings. I saw first-hand the devastating effects that prolonged untreated psychosis can have, regardless of gender, race, colour, or socioeconomic background. Given that we were in a tertiary care setting, we received some of the illest patients whose symptoms had worsened from years of living with an untreated psychotic disorder. You know them. You walk by them every day, giving them a wide birth of passage. They are “those” men or women walking around, dressed oddly or in tattered clothing, and sometimes sputtering out profanities at someone only they can see. They walk our streets, homeless, helpless, loveless. They are our brothers and sisters who, for whatever reason, “fall through the cracks” of our system and are left to deal with their illness themselves, a sure recipe for disaster when it comes to any psychosis-related disease. For this population, a full recovery is often not possible. However, it is possible to recover enough to work and live independently.
Men and women regularly arrived at our facility as faint semblances or mere pieces of their former selves. There are too many examples to share. I recall a once successful Hairdresser arrived on our unit. She adorned a hairdo one foot tall by one foot wide, looking more like an elaborate, ornate nest from some exotic bird than a hairstyle. A once graduate student stood partially hidden behind his hospital room door, his eyes darting right to left. Then, a week later, his medication starting to take effect (he still had months to go in his recovery), he stood again in his doorway, but this time, his door opened wide enough to see more of him. He was sporting a massive bushel of matted beard large enough to hide another massive bushel of matted beard. His eyes were now less preoccupied with danger but still not dare to leave his room.
Others arrive malnourished, thin from self-neglect or having stopped eating altogether because “the government poisoned the food supply to kill us all off.” Then there is the story of the patient who could only eat soft food after having all his teeth pulled. To this day, I do not know if he pulled them out himself or if he had convinced a dentist. Rumour has it, a dentist did it. What I do know is during a full-on psychotic break, he believed his teeth were somehow transmitting personal information to ‘the enemy.’ Hence, his decision to have them extracted.
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Also, upon arrival patients were often unable to string a coherent sentence together, and those who could, spoke of things, not of this world. Then, after several months of intense treatment, I witnessed these very patients be discharged from hospital. Now, recognizable to themselves and loved ones and no longer existing on the fringes of society. Nothing short of a miracle.
A Colour Imbalance
In 2017, while working on an inpatient schizophrenia unit, a fellow social worker turned to me and said: “There are more black patients than white, and they’re so sick and taking much longer to recover.” My initial thought was: ‘he’s mistaken; the numbers will eventually even themselves out.’ However, my colleague’s comment stayed with me. He was not one to embellish or make ad hoc remarks. Hence, I began to investigate to see how much weight (if any) there was to his observation and why.
The next day I began to research any literature on the subject I could find. I discovered, on average, patients of African and Caribbean ethnicity outnumber their European ethnic origin counterparts in inpatient psychiatric settings (Hamilton). Further, patients of African and Caribbean ethnicity present with elevated psychotic symptoms, take longer to recover, and are more likely to receive a diagnosis of schizophrenia after controlling for other possible factors such as genetics, housing, and finances (Hamilton) (Ferrari). So, my colleague’s observation was correct.
Digging deeper I also learned, people of African and Caribbean origins are underrepresented in outpatient psychiatric care (Hamilton) (Ferrari). Additionally, there were significant delays in receiving treatment (Hamilton) for first-episode psychosis over European descent patients (Ferrari).
Ok, so patients of colour are overrepresented in inpatient psychiatry and now I discovered are under-represented in outpatient care. What was going on here? I decided to take a short break from my research and walked up a flight of stairs, down a corridor, past a snack bar, and through a series of secured doors to our Forensic Psychiatric unit where my good friend and fellow psychiatric social worker, Elsie, worked. After pressing a series of buttons, and the clicking of various doors unlocking I found myself in her office. Elsie is African Canadian, she emigrated from a country in mid-western Africa to Canada many years ago, if anyone could shed some light on my findings it was her. And she did. Elsie talked about how stigma in her own community prevents people from seeking help early which is why they are underrepresented in outpatient psychiatry. This made perfect sense because first-episode psychosis is more often than not treated in outpatient psychiatry and does not usually require long hospital stays, if at all.
Furthermore, Elsie went on to say:
“Stigma is a systemic problem in African communities; even highly educated professionals find it easier to believe a loved one is possessed or lazy, or want to escape ‘socially constructed’ responsibilities like getting married and having children. Anything but accept the shame of a diagnosis of schizophrenia. Also, psychoeducation often doesn’t work. How can you educate someone when they refuse to believe schizophrenia even exists? African Canadians require a different approach to breaking the stigma. Unfortunately, current anti-stigma campaigns do not speak to these communities. Subsequently, they are pushed to the margins of society, often homeless, addicted to drugs or landing in treatment only because of a crime they committed during a full-on psychotic break and end up in the forensic system.”
A little wiser, I returned to my office where I put my research hat back on.
We know that negative stereotypes and beliefs about mental illness are pervasive in the western hemisphere and mental health professionals are not exempt (Corrigan). Stigma of any kind causes suffering and isolation when what is needed and prescribed by psychiatrists is compassion and acceptance. African and Caribbean Canadians appear to be more affected by stigma and less likely to seek mental health treatment (Orlena). Also, when individuals of African and Caribbean descent do get treatment for their illness it is often due to a crisis involving police (Hamilton) (Merritt-Davis).
Upon reading this, it brought to mind a patient I had the honour of being his primary support on our treatment team. Let’s call him Sam for confidentiality purposes. Sam was a 25-year-old handsome and soft-spoken young man from a privileged upper-class background in Uganda. Sam moved to Canada with his uncle and cousins as a refuge at age 12. He lost both parents due to civil unrest back home. He heard his first voice at age 14. At age 17, he was kicked out of his home because his family interpreted his gradually worsening symptoms as laziness and lack of respect. He spent most of his time alone in his room, did not attend to his regular chores, missed school, and rarely bathed. Unable to stay in school or maintain a job and pushed to the fringes of society. He eventually lost all contact with his family and spent most of his time homeless, bouncing around from shelter to shelter. His illness had gone untreated for over ten years.
Help Me, Don’t Arrest Me
At the point of his arrest, Sam was contending with over 20 voices in his head. All with distinct personalities and all vying for his attention. The chatter was consistent. When one voice stopped another began. Sometimes giving him orders such as: “walk around the block backwards or stand on one leg for an hour.” At other times one of his more aggressive voices would remind him of how much of a “disgusting piece of shit” he was. Collectively, they rarely let him sleep. He was forever exhausted.
Sam’s voices were as real to him as our experience of hearing a friend’s voice during a real-life conversation is to you or me. In fact, if you were to place Sam into an FMRI during a psychotic episode. The voices he was hearing in his head would light up the same area of the brain when one is hearing an actual person talking to him in real-time and space.
Late one night, after walking the streets for hours, Sam found himself in a situation that could have gone very badly for everyone involved. He entered a home through a sliding glass back door that had been left open. He was in the house for some time before the couple who had been sleeping woke up from the sound of loud music. To their horror, they found a strange man (Sam) standing in their living room blasting music from their stereo’s speaker and quickly called the police. Sam was arrested and charged at the scene.
As it turned out, Sam’s voices told him the couples’ home was a “safe house,” and he was to go inside and wait for further instructions. All, part of an elaborate plan to avoid lethal capture by the CIA. When inside, he turned the couple’s radio on high to “scramble” any signals emitting from a GPS device (which he believed to be “implanted” in his brain) to avoid detection. After spending 48 terrifying hours in jail, Sam was finally admitted to hospital but not without criminal charges which was another nightmare and a story in itself.
Successful outcomes for psychotic disorders are primarily dependent on early intervention (Hamilton) (Ferrari). In this light, the research shows cultural stigma plays a significant role in preventing African and Caribbean North Americans from seeking early intervention treatment (Hamilton) (Ferrari).
An ACE focus group interviewed young male and female patients with first-episode psychosis comparing similarities and differences that stigma may have had in accessing care (Ferrari). People of African and Caribbean backgrounds commonly reported feeling guilty and often saying they felt responsible for their illness. God was punishing them for something they had done, rendering them a feeling of no control (Ferrari). The European descent population did not mention guilt. Instead, a common theme shared was feeling a lot of shame and humiliation for “hearing voices” and for their “unpredictable and bizarre behaviour” in front of friends and loved ones (Ferrari).
Overall, my research uncovered on average, patients of African and Caribbean ethnicity outnumber their European ethnic origin counterparts in inpatient psychiatric settings (Hamilton). Further, patients of African and Caribbean descent present with elevated psychotic symptoms and take longer to recover. Additionally, we are now aware African and Caribbean Canadians/Americans are more affected by cultural stigma and thus less likely to seek early mental health treatment (Orlena). Often, by the time their illness is brought to the attention of a medical doctor, the individual’s illness is at its worst and subsequently resulting in a crisis in the community involving police (Hamilton) (Merritt-Davis).
In closing, I am comfortable stating that cultural stigma plays a significant role in preventing individuals from accessing treatment for first-episode psychosis in African and Caribbean communities. Subsequently, it is often years before this population gets help. In the process, their symptoms have greatly exacerbated and are harder to treat making for longer inpatient hospital stays. Early intervention is the hallmark for long-term wellness and recovery. Therefore, it is crucial for mental health professionals to work together with the leaders from African and Caribbean communities to better understand the culture and to strategize ways to eradicate stigma. Our brothers and sisters’ lives depend on us.
Jane E. Hamilton, A. M. (2015). Racial disparities during admission to an academic psychiatric hospital in a large urban area. Comprehensive Psychiatry, 113-122.
Manuel Ferrari, N. F. (2015, January 22). The African, Caribbean and European (ACE) Pathways to Care study: a qualitative exploration of similarities and differences between African-origin, Caribbean-origin and European-origin groups in pathways to care for psychosis. BMJ Open, 1-12.
Orlena B. Merritt-Davis, M. M. (2006 ). Pathways to Care for African Americans With Early Psychosis. Psychiatric Services, 1043-1044.
Patrick Corrigan, A. C. (2002, February 1). Understanding the impact of stigma on people with mental illness. World Psychiatry, 16-20.
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