A disease of silence? Social stigma and schizophrenia
Schizophrenia is one of the most common health conditions yet it is also one of the most misunderstood, a knowledge gap that leads to a very stereotyped view of the disease. For example, many people believe that people with schizophrenia are violent and dangerous when in fact they are more at risk of attack or of hurting themselves than harming other people. Summing it up in his book, Surviving Schizophrenia, senior psychiatrist Dr E Fuller Torrey calls the condition “the modern-day equivalent of leprosy”.
Many people with schizophrenia recover fully or are able to manage the condition well enough to lead normal lives, especially if help is sought early on. However, in common with other mental health conditions, the disease brings a strong social stigma and discrimination.
In 2008, the National Alliance on Mental Illness (NAMI) conducted a survey to better understand the depths of the stigma surrounding schizophrenia. The survey found that:
- 85% of respondents understood that schizophrenia is a medical illness
- Only 43% said they would tell their friends if they had schizophrenia.
- 27% admitted that they might be embarrassed if a family member had the illness.
- Almost half of those living with schizophrenia said they felt that doctors did not take their physical health complaints seriously.
For many people, the stigma and discrimination they experience – from society in general but also from families, friends and employers – can make their problems far worse. Nearly nine out of ten people with mental health problems say that stigma and discrimination have a negative effect on their lives. Among those with a long-term health condition or disability, people with mental health problems are amongst the least likely to:
- find work
- be in a steady, long-term relationship
- live in decent housing
- be socially included in mainstream society.
The NAMI survey highlighted the social and professional challenges that people with schizophrenia face, which can have huge impacts on their quality of life. The survey showed that:
- Nearly one-quarter of respondents would not want to work with someone with schizophrenia, even if he or she was receiving treatment
- 34% would not want their boss to have schizophrenia
- Nearly half would not want to date a person with schizophrenia, even if the person was in treatment.
The stigma associated with schizophrenia also poses a dilemma for many doctors, says Ken Duckworth, MD, medical director at NAMI and assistant professor at Harvard Medical School. “Doctors are reluctant to make a diagnosis. They don't want to give you what amounts to a social death sentence.” He called schizophrenia a “low-status illness”, meaning it doesn't have the same acceptance as diseases such as breast cancer or inherited genetic problems.
Social stigma in Jewish communities?
Jewish communities have a long history with schizophrenia and many of those links are surprising. For example, there is a commonly held belief that those in the Ashkenazi community are at higher risk of developing the disease. This myth is explained by the fact that members of the Ashkenazi community have participated in a series of studies aimed at understanding the biological basis for both schizophrenia and bipolar disorder as part of the Epidemiology/Genetics Research Programme in Psychiatry at Johns Hopkins University.
Blogger and multi-faith chaplain, Diane Weber Bederman, quoted these studies in her blog article Mental Illness and the Jews. “Due to a long history of marriage within the faith, which extends back thousands of years, the Jewish community has emerged from a limited number of ancestors and has a similar genetic makeup. This allows researchers to more easily perform genetic studies and locate disease-causing genes.” She added: “Results of the studies: Scientists estimate the incidence of schizophrenia in the Ashkenazi Jewish population to be no higher than that of the general population (about one percent).”
Mental health problems may not be more common in Jewish populations, but what about social stigma? Betty Jampel, writing in the New Jersey Jewish News, has a clear message: “It is a sad fact of life that… we are still dealing with mental illness as a shameful malady. While there have been public awareness campaigns to destigmatise mental illness and a shift in the scientific community to understand the biochemical nature of psychiatric illnesses, the shame persists. Those with mental illnesses still tend to be viewed as flawed, as somehow not doing enough for themselves to get better.”
The focus should be on tackling social stigma, she added. “As a Jewish community of mental health professionals, clergy, and laypeople, it is incumbent on all of us to change our perceptions of mental illness and to stop perpetuating the myths that come with these disorders. We as a Jewish community need to embrace differences and practice inclusion in all the various settings that bring us together. We need to stop judging others and to lovingly accept that we are all here to fulfill different life goals. We may look different and our life’s goals may be different, but put all together, we are all here to lift each other as a collective community.”
Schizophrenia is a long-term mental health condition with a range of psychological symptoms, from
hallucinations to delusions, which can lead to muddled thoughts. These symptoms can result in changes in behaviour. Schizophrenia is seen as a psychotic illness as a sufferer may sometimes be unable to distinguish between their own thoughts and reality. It is the most common form of psychosis.
Clinicians differentiate between two groups of symptoms: positive and negative. Positive symptoms include hallucinations and delusions whereas negative symptoms include physical tiredness and a lack of motivation. While positive symptoms tend to be more dramatic and, at first, the most distressing, negative symptoms usually cause more problems, as they can last longer.
Schizophrenia affects about 7 per thousand of the adult population, mostly in the 15-35 age group, and affects 24 million people worldwide. Typically diagnosed between the ages of 15 and 35, the condition affects men and women equally. It is estimated that 1 in 100 people will experience schizophrenia in their lifetime.
Around 25% of those diagnosed only have one episode of illness and make a good recovery with no further problems. Another 25% progress to a chronic, long-term state with no periods of remission. The remaining 50% suffer periods of remission and relapse on a long-term basis.
The World Health Organisation estimates that 90% of those with untreated schizophrenia are in developing countries and half of all people with schizophrenia do not receive appropriate care.
The mainstays of treatment are atypical antipsychotic drugs, such olanzapine, quetiapine and risperidone, which are used to improve symptoms and prevent relapse. Antipsychotics can be given as long-acting, depot injections, helping boost compliance/patient adherence. While these drugs are associated with fewer side effects, older treatments, including chlorpromazine, haloperidol,
trifluoperazine, are still used. While more research is needed, it appears that talking therapies such as Cognitive Behavioural Therapy (CBT) can reduce the incidence of relapse. Research also shows that interventions with sufferers’ families can impact relapse rates. Click here for more information on schizophrenia.