Schizophrenia, the Stigma, Reality, and Hope
Being Partially informed or influenced by misinformation creates significant problems for those affected with disabilities and the community at large.
The hidden, marginalized, and ignored
My wife and I headed downtown to grab a bite in the festive downtown atmosphere of Asheville. Things have changed in the past couple of years with the economic downturn and COVID-19, with more people having difficulty making ends meet to survive these difficult times. As we got out of our car and parked in an area downtown under the highway bridge, there appeared to be more homeless people gathering, especially as they would have a soup kitchen there later in the day.
Several people were waiting near where we parked, sitting, or milling about. We walked up towards the downtown area, following a young man, perhaps in his thirties, looking disheveled with a backpack and carrying a large green trash bag with his belongings. In my mind, I thought that he probably had a significant disability, could not find any employment or support from families or friends and was forced to be homeless.
As we got closer to the downtown area where we were going, we passed a bench near a parking lot where three men, probably in their thirties to fifties, were sitting with green trash bags beside them with the appearance of also being homeless. As we passed them, another young man appeared in a rage, swinging his arms in the air and loudly voicing his grievances about injustices. He had some involuntary movements of his arms as he yelled angrily and shouted toward imaginary voices and people not there. As we grew near, his anger escalated, and he started swinging wildly and punched the side of the outside wall of a public porta pot with all his might. He then pivoted and seemed to come towards us, swinging his arms in an agitated way. As I was familiar with the behavior, having worked with others with similar disabilities, I knew to give the person in a frantic rage space and to back off. Once or twice, a patient assaulted me in the beginning years of my mental health work, but luckily with no serious injury.
My wife beside me was terrified and moved out into the street as I did until we got around him. Now I wanted to contact emergency services but was reluctant to do so as I knew that if the police arrived, it would be hard to say what the outcome would be. Also, no immediate emergency response mental health service would be immediately accessible. We continued up and around the block to get my wife to a place of safety, and we talked a little about the situation with so many homeless people that need mental health services and the current inadequate funding and availability of mental health and social support services.
In a calming way, I talked with my wife about the difficulties that can develop with a schizophrenic illness and my experiences working with the homeless and schizophrenic population in the community mental health services and psychiatric hospitals. As my wife listened, she thought of the young man we had just passed and some of our family members with disabilities who fortunately had a social support network around them and access to needed services. As she was frightened by the experience and upset at the plight of the disabled young man, she felt overwhelmed and cried.
When she felt safe, I turned and walked back to see how the young man was doing to see if any help might be available. He wasn’t there, even though the three homeless men were still sitting on the bench. As I walked a little further down the street, I saw the same young man who seemed more composed and calmer as he was getting some coffee and some food from an open window service of a restaurant there. He was still a bit confused and kicking at small objects like rocks and cans as if to clear them away from the sidewalk to create orderliness. I surmised that he had an open space earlier to vent his anger, and fortunately, no injuries occurred, including to us. He had let out his rage, and maybe somebody had provided some money. Or he had gone to the open restaurant window nearby, and they had given him some coffee and food.
We later returned to our car, parked in the lot under the bridge. A more significant number of homeless people were milling around or waiting to get food or drink in the portable food kitchen that had just opened.
Awareness and knowledge to resolve ignorance and stigma about mental illness
Schizophrenia is a developmental, mental disorder and can lead to chronic disability that affects how a person understands things, learns, thinks, feels, and behaves. It can cause a person to experience hallucinations, delusions, disorganized thinking, and cognitive and behavioral problems. People with persistent schizophrenia often struggle to fully understand, communicate, or have the same perception of observed or experienced situations as others. It is more difficult for them to learn and accomplish things than others.
According to the World Health Organization, at least one-third of people with schizophrenia will have remission of their difficulties. Others will experience worsening and remission of symptoms episodically throughout their lives, leading to significant disability.
While schizophrenia can be a devastating illness, it is much less common than other mental disorders, such as anxiety and depression. It affects approximately 24 million people, about 0.32% of people worldwide or 0.45% of adults. People with persistent or chronic schizophrenia can better manage their symptoms and day-to-day living with the proper support and treatment and sometimes return to independent and productive lives.¹
While some will go into remission, there is no cure for most with schizophrenia; treatments available can help manage symptoms and improve quality of life.
A friend and neighbor recently wrote an outstanding autobiography and educational resource for people unfamiliar with the travails of having a family member affected by a mental illness and struggling to cope and find recourses. It is a heartfelt and captivating story of the struggles and anguish of a family caught in the grips of an unforeseen challenge of a family member developing schizophrenia. With courage and facing the realities and growing demands, they meet the challenges as told in a beautifully written personal story of love and compassion. Two Hearts on a Rocky Road by RoseLynn Katz.²
Schizophrenia, the term and causes
The term “schizophrenia” was first used in 1911 by Swiss psychiatrist Eugen Bleuler, derived from the Greek words meaning spit mind. The time reflects that individuals with schizophrenia experience a disruption of their mental processes and lose the regular interaction of different areas of the brain’s neural networks.
According to the National Institute of Mental Health, schizophrenia is a leading cause of disability globally, usually diagnosed between the ages of 16 and 30 after the occurrence of psychotic symptoms. Illness is slightly more common in men, with onsets more typical in the early 20s and women in the late 20s. The exact cause of schizophrenia is unknown but believed to be a combination of genetic, environmental, and psychological factors.³
The symptoms of schizophrenia can vary from person to person, and those that persist may include
- Hallucinations: Hearing voices (more common) or seeing things not present
- Delusions: False fixed beliefs that are not logical or reality-based
- Difficulties with thinking: loss of thinking skill as problems concentrating, learning, planning, carrying out complex tasks, speaking chaotically or confusingly, and trouble understanding what is said
- Disorganized Behavior: Agitated body movements, inappropriate behavior, difficulty completing everyday tasks or learning new ones, frustrations, and emotional meltdowns and rages
- Flat affect (deceased emotional expression)
- Lack of motivation
- Withdrawal from social situations and relationships
These neurological disorders of schizophrenia are predisposed to by many suspected genetic loci. These genes are associated with the regulation of dopamine, contributing to the primary causes of schizophrenia. Scientists have known for decades that abnormal dopamine levels are associated with some psychosis and are a key contributing factor in schizophrenia and other neuropsychiatric disorders.
Genes and Genetics
Schizophrenia is complex and has been studied for many years, with much still being researched and discovered. The links between the many genes and the specific DNA and protein changes involved in schizophrenia pathophysiology are yet to be completely identified. The dopamine molecule, the neurotransmitter, influences brain reward and pleasure centers and is felt to be a significant factor in schizophrenia. Its regulation has been a target of some antipsychotic medications.
Genetics has a role in the development of schizophrenia as a family history of the disorder has been linked occasionally to the disease occurring in other family members.
Exposure to viruses, malnutrition, and other environmental factors during pregnancy and early childhood is also thought to increase the risk of schizophrenia.
Stressful life events and psychological trauma can increase the risk of developing or bringing on the disease.
Schizophrenia is diagnosed based on symptoms, medical history, and family history. To make a diagnosis, a mental health professional will observe appearance and behavior and ask questions about family history; symptoms, thoughts, emotions, delusions, hallucinations; drug use, and ideas or intention of violence or suicide.
Determining schizophrenia involves ruling out other mental health disorders such as substance abuse, medications, or other medical or mental health conditions. Severe Post Traumatic Stress Disorder, personality disorders, and bipolar disorders can sometimes mimic schizophrenic-like symptoms and have other more specific interventions and treatments.
In addition, imaging tests such as MRIs or CT scans check for other conditions. Blood tests look as well for different causes.
Treatment Options for Schizophrenia
There is no cure for schizophrenia, but treatment can help manage symptoms. The most current effective treatment for schizophrenia is a combination of medication and psychosocial interventions.
The most common medications used to treat schizophrenia are antipsychotic medications. Antipsychotics help reduce hallucinations and delusions, improve concentration, and reduce agitation and other disorganized behavior.
Residual schizophrenia is when the person has recovered from psychotic symptoms and experiences such as delusions, hallucinations, and hearing voices but lacks emotionality, spontaneous speech, disorganized thinking, and difficulty with organization and planning. The medications effectively decrease a person’s positive symptoms, such as hallucinations and delusions. Still, they do not address the negative symptoms, such as social withdrawal, lack of motivation, and cognitive deficits associated with schizophrenia.
- Cognitive-Behavioral Therapy (CBT) is a type of psychotherapy that helps people identify and modify thoughts and behavior causing distress
- Family therapy can help family members learn how to support their loved ones
- Vocational and Social Skills Training helps people with schizophrenia develop job and social skills when they are able
- Supported Employment helps people with schizophrenia find and keep a job
- Psychoeducation helps people with schizophrenia and their families understand the disorder and its management
Holistic Treatment Options
In addition to medication and psychosocial interventions, there are also holistic treatments that can help manage schizophrenia. Many of these options, however, are difficult unless a person can do them in a well-structured treatment program. These treatments can include:
- Diet and Nutrition: Eating a healthy, balanced diet and avoiding processed, high sugar, salt content foods helps reduce the common secondary illness that plague and shorten the life expectancy of people disabled with schizophrenia
- Exercise: Regular exercise and stress management techniques, when available in treatment programs, can help reduce stress and decrease symptoms
- Getting enough and regular sleep
Phases of Schizophrenia
The prodromal phase is before the first psychotic episode, including social withdrawal, strange beliefs or behavior, poor hygiene, subdued emotions, sparse speech, atypical sensory experiences, and low energy.
The active phase is when the psychosis is evident and involves hallucinations such as hearing voices, paranoid delusions, decreased spontaneous talking, and disorganized speech and behavior. Psychotic symptoms can last for weeks or months without treatment and generally leads to hospitalization.
The residual phase is where the active psychotic manifestations have diminished, often with incapacitation persisting in social and occupational functioning, leading to chronic disabilities and cognitive losses (thinking, reasoning, and planning abilities). In this chronic residual phase, the capacity for independent living can be lost.
Generally, people observe a decrease in psychotic symptoms after treatment initiation, followed by ongoing residual-phase manifestations. Missed or inconsistent medication use usually results in a relapse; early treatment improves outcomes; a better prognosis has been associated with a higher degree of functioning before the illness onset, being a woman, occurring at an older age, having a sudden versus gradual onset.
There is a higher risk for other difficulties in people diagnosed with schizophrenia as obesity, diabetes, heart disease, hypertension, anxiety, depression, and tobacco use disorders. Life expectancy is often less by ten to twenty years in people with persistent schizophrenia.
Stopping medications can cause symptoms to come back. It is also vital to remain in treatment and take drugs when advised, even when symptoms are under control. Hopefully, future continuing research will lead to effective, innovative, and improved medication and non-medication therapies.
Strategies for Those Living with Schizophrenia
Some strategies can help manage symptoms and improve quality of life, including:
- Sticking to a Treatment Plan: Taking recommended medications as prescribed and attending available therapy sessions regularly.
- A routine can help manage symptoms and reduce stress and frustration.
- Connecting with Others: Connecting with family and friends can help reduce stress and improve quality of life.
- Seek help if more symptoms occur, or you feel increasingly overwhelmed, threatened, or frightened.
- People who experience severe psychotic symptoms from a schizophrenic episode may need a higher level of care than available in the community. The escalation of symptoms may require emergency assessment by a mental health provider for increased services and treatment and possible hospitalization for the safety and needed care.⁴,⁵
TIPS and POINTS TO PONDER
1. Schizophrenia is a potentially debilitating mental illness affecting people’s thoughts, feelings, functions, and behavior. It can cause psychosis and lead to disability that may affect functioning in multiple areas, including personal, family, social, educational, and occupational activities.
2. While currently there are no definitive cures for schizophrenia, effective treatments are available to help manage symptoms and improve quality of life. With the proper support and treatment, people with schizophrenia can improve symptoms and live more independently and productively. More awareness about schizophrenia, its causes, symptoms, diagnosis, and treatment options will increase understanding and support for this underserved community.
3. There is the hope that current and future research will unlock some of the mysteries of schizophrenia and lead to a greater cure rate, better and more effective treatments, and less disability as an aftermath of the disease.
4. People Better informed about the difficulties and debilitating nature of persistent schizophrenia can help decrease stigma, discrimination, and violation of the human rights of those afflicted with the disease.
5. Unfortunately, more than two out of three people with schizophrenia or like illnesses do not receive the mental health care needed, according to the World Health Organization, and certainly contributes to the rising homelessness now seen. Be aware of these debilitating mental health illnesses and the lack of support for funding and services, and advocate for change and support in the needed areas.
6. As an estimated, one in three people that develop schizophrenia will be able to recover fully when effective care options are available — a priority for funding research and services needs as many advocates and public servants as possible.
7. Be in the debate about what will help promote the humane care and needed level of service for those with a disability or mental illness. Be open-minded and informed so as not to become reactive or taken in by the self-serving narrative of power interests, politicians, or corporate business interests, that are not acting for the public benefit. The interests that spread the wrong message and disinformation about the mentally disadvantaged and disabled reinforce the stigmas and misunderstandings that frighten the public to not support programs and services for the population with markedly underserved needs.
8. Some more short-sighted thinkers want to lock the disadvantaged away, out of sight, and force treatments. A much more sensible way would be to increase public funding, research, and service that would potentially alleviate many of the problems. See a recent article about conflicting points of view about doing more forced involuntary treatments for schizophrenia and institutionalization versus more public funding and service. There must be some middle road instead of the current persisting division of opinion and stalemate on doing practical actions.⁶
9. Contact a healthcare provider or community mental health services to help find resources or treatment. You can also find more information and resources on the National Institute of Mental Health website, as noted below.
The article was originally published on Mind Wise with tips, references, and resources.
¹ Information and resource from the WHO, fact sheet on schizophrenia, January 2022; https://www.who.int/news-room/fact-sheets/detail/schizophrenia
⁵ Schizophrenia, article by David Mansoor, MD, Associate Professor of Psychiatry, Oregon Health and Science University, Portland, in the Audio-Digest Family Medicine, subscription program, Aug 07, 2021
⁶ Article by Ellen Barry, Dec. 11, 2022, Behind New York City’s Shift on Mental Health, a Solitary Quest; The psychiatrist E. Fuller Torrey has been advocating tougher involuntary psychiatric treatment policies for 40 years; https://www.nytimes.com/2022/12/11/health/fuller-torrey-psychosis-commitment.html