The Devastating Diagnosis of Schizophrenia

The official definition of schizophrenia according to the National Institute of Mental Illness (NIHM) is as follows:

“Schizophrenia is a chronic and severe mental disorder that affects how a person thinks, feels, and behaves. People with schizophrenia may seem like they have lost touch with reality. Although schizophrenia is not as common as other mental disorders, the symptoms can be very disabling.”

This brief and to the point description of the traumatic diagnosis that is schizophrenia only brushes the surface. The pain and suffering schizophrenia often brings to those who live with the condition and their families is devastating.

A Few Brief Facts Before We Begin
Schizophrenia is one of the top fifteen leading causes of disability worldwide. What’s worse is that individuals diagnosed with the disorder have an increased risk of dying young with the average age of death in the United States for just 28 years.

Worldwide and in the U.S. the financial costs associated with schizophrenia are enormous, higher than any other chronic illness. This cost estimate takes into consideration the loss of productivity, criminal justice involvement, and social service needs.

Now, before we discuss the disorder from the person-centered vantage point, let’s talk about the age of onset, prevalence, and symptoms.

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The Age of Onset of Schizophrenia
Schizophrenia strikes young people from as early as late teens to the early thirties with a tendency to affect males in the early twenties. Females generally have onset in their early twenties to early thirties.

However, subtle changes in thinking patterns of those who after eventually receiving a diagnosis of schizophrenia may start many years before the disorder becomes apparent.

The Prevalence of Schizophrenia in the United States and Around the World
Getting precise measurements of how schizophrenia affects the national and world population is difficult. This problem of lack of precision exists because schizophrenia is a very complicated diagnosis and overlaps with other disorders. Declaring exact numbers is also hampered by the various methods used to determine the diagnosis.

However, reports it estimates that in the United States 1% of the population live with the diagnosis of schizophrenia. That means that 3.3 million US citizens live with this life-altering diagnosis. Estimating the prevalence of schizophrenia in the worlds has met with the same and more constraints. Among non-institutionalized persons, the estimates also 1% meaning that there are currently in the world 76 million people are living with the effects of schizophrenia.

Symptoms of Schizophrenia
The symptoms of schizophrenia at first may seem subtle. So much so, that sometimes family members put down the changes they see as a fluke or a phase their adolescent may be experiencing. However, as the disease progresses so do the symptoms until they become too alarming to ignore and need addressing. The symptoms listed below are only some of the symptoms experienced in the diagnosis of schizophrenia.

• Hallucinations—seeing or hearing things that aren’t there
• Delusions—believing things that are not true about themselves or someone else
• Unusual or dysfunctional ways of thinking
• Agitated body movements
• “Flat Affect”—reduced expression of emotions, facial expressions or voice tone
• Lack of pleasure
• Reduced speaking
• Withdrawal
• Problems with the ability to use information immediately after learning it
• Inability to understand information and use it to make decisions

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Living on the Edge
The last on the list above, the inability to understand and use it to make decisions is why people who have the diagnosis find themselves getting shot and killed by police.

The mind of a person living with active psychosis from schizophrenia is unable to immediately understand what is being said and act on those orders.

Thus, when a police officer orders someone to get down on the ground, the person who is in this state may not understand or act for up to twenty-five minutes. Unfortunately, by then, it may be too late.

Encounters with the police are only one of the ways people living with the disorder live life on the edge. Many people living with schizophrenia live on the streets and face becoming victims of violent crime.

The Plight of Families

Luckily, many have families who care for them and try their best to safeguard the welfare of their spouses, children, and grandchildren.
The heartache of someone they love receiving such a devastating diagnosis is the reality that there may be few doctors who specialize in its treatment in the family’s reach.

Mental health care in rural communities and developing countries is problematic at best. Psychiatrists tend to want to live in communities where they can make the most money, and rural communities are known for their low populations and low wages.

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Roadblocks to Getting Quality Care
Many problems plague families when searching for help. The first and perhaps the worst is finding someone who will listen and correctly diagnose their loved one. All too often families are met with disbelieving mental health professionals in rural communities poorly trained in the recognition and treatment of schizophrenia.
These doctors and nurses tend to want to err on the side of caution. They take into consideration what their new patient is saying, not listening to the cries for help from the family.

Unfortunately, the last person to know they are ill is the person with schizophrenia, and so they do not agree or recognize as accurate about what their family has been telling them. They are told to go home without follow-up or medication.

Lack of Early Diagnosis Has Consequences
One of the most exciting yet saddest findings in the latest research conducted on schizophrenia is that if caught early, it can go into remission. Sometimes, this remission can be permanent.

It is exciting because these findings mean that people who exhibit their first psychotic episode will respond well and with long-lasting results if treated within the first few days.

It is tragic because this is rarely the reality, primarily when one lives in rural America or a developing country.

In rural America, the waiting list to see a psychiatrist or even a master’s degree therapist is usually weeks if not months long. So, the person experiencing the symptoms of schizophrenia may go untreated longer than is helpful for putting their disorder into remission.

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Problems with Inpatient Care
Relatives of those living with schizophrenia face the terrifying prospect of their loved one needing to live inpatient for an undetermined length of time. Not only is such a stay costly, but hospitalization can be extremely traumatic for both the family and their loved one.

The reasons are horrific. Not all hospitals are humane and follow the proper protocol set to protect patients receiving inpatient mental health care.
Before continuing down this line of thought, it is important to remind all that not ALL hospitals are harmful or abusive environments. However, the few that are paint a very ugly picture.

Existing in the United States of America
There are hospitals, especially those located in rural areas, that are understaffed and the staff they do have is underpaid. This understaffing often means the hospitals cannot hire the best quality psychiatric nurses and other mental health professionals.
In these places, drugs are often overused as chemical restraints to keep patients compliant.
These hospitals are not all located in third world countries, although it can be sure they exist there as well, many exist in the United States of America.

Quote from a Mother
A quote from a family member from NAMI gives an accurate picture of how it felt to find her son drugged in his room day after day while inpatient.
“I would go to visit him, (her son diagnosed with schizophrenia) and he would be so drugged he could not hold his head up. I would ask a nurse why he was like that and she would say the doctor ordered it. When I insisted to see the doctor, she’d shrug her shoulders and say I would need to wait until he made his rounds.
But when the doctor came to the floor, he would either refuse to see me or tell me my son was violent.
He has never been violent, confused and delusional yes, but never violent.
I decided to take him out of there right there and then.”

This man was lucky; his mother had the insurance coverage and the courage to stand up to the doctor and move her son. Millions of people just like her boy do not.

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Death by Suicide
An even harsher statistic of those who live with schizophrenia is that 5%-13% will die by suicide, with the highest incidences occurring in the early stages of being diagnosed (Pompili et al., 2007).

The main reasons these folks decide to die are hopelessness, social isolation, deteriorating health and being rejected by family and friends.
Another essential factor in this tragedy is that many who find themselves living with this disabling disorder experiencing a loss of confidence in treatment. The person who is trying to find help for their schizophrenia diagnosis may be bounced from hospital to hospital and doctor to doctor and finally conclude that their life is over already so why not end it now.

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What We as a Society Can Do to Help
The causes of schizophrenia are not well-understood which means that no family can say with absolute certainty that it will not come knocking on their door next. The disorder strikes families who often have no known mental health issues in their families, leaving them scratching their heads and blaming themselves thinking they did something wrong.

The tragedy that is schizophrenia involves all of us. If we are to help these wounded souls and their families to cope, we must stop the stigmatizing behaviors that have separated them from us for too long.

People who live with the diagnosis of schizophrenia are people first, ordinary human beings whose brains have gone wrong. They did not ask for schizophrenia; they did not desire it, the disorder came without warning and robbed them of their lives.

It is up to us to end the name calling and blaming the weakest of our society for our woes. They are just like all of us; they deserve respect, dignity, and all the care we can muster.

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There is Hope
New research is being conducted almost monthly to find the biological causes of schizophrenia and other mind-robbing diseases such as Alzheimer’s Disease. With this research comes new insights into the parts of the brain that are involved and how to treat the damage they find. New drugs are being developed as well with fewer side-effects and targeting more of the regions most associated with the disorders advancement.
In time, science will find the answer and stop the devastating diagnosis that is schizophrenia.

From PatientNextDoor Editorial Team
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Pompili, M., Amador, X. F., Girardi, P., Harkavy-Friedman, J., Harrow, M., Kaplan, K., … & Montross, L. P. (2007). Suicide risk in schizophrenia: learning from the past to change the future. Annals of general psychiatry, 6(1), 10. Retrieved from:

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