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Psychopharmacology
Looking Back on Living With Untreated Schizophrenia
How a lack of insight into one's mental condition can cause extended suffering.
Posted October 6, 2023 Reviewed by Tyler Woods
October 1-7, 2023, marks Mental Illness Awareness Week. This is a time for people with mental illness, their families, and the community to gather together and constructively dialogue about the realities of mental illness in America and the best ways to broaden awareness through education and facilitate access to health care.
The community of individuals affected by mental illness is broad, and symptoms vary widely. Most people with psychiatric diagnoses will undergo several trials of medication and various treatment options to identify a plan tailor-made to them—effective, with minimal to no side effects. Everyone is an individual and will have unique responses.
I find it interesting that despite the great variety and differing severity of psychiatric diagnoses, people often experience a common symptom: a lack of insight. This is technically called “anosognosia,” which comes from the Greek, meaning “to not know a disease.” Simply put, people can become severely ill without realizing they have anything wrong with them. This is what makes this broad spectrum of psychiatric diagnoses unique and distinct from all other physical diseases and disabilities.
Anosognosia can cause a person to forget the life they once had. Some people lose interest in school or a job they spent years preparing for and instead quit and isolate themselves. Many are unwilling to accept a diagnosis due to stigma, unaware that the brain disorder they are suffering from can affect people of every level of intelligence, independent of race and socioeconomic status.
A lack of insight can negatively and deeply affect a person’s social life, financial situation, and even their safety.
My anosognosia story
Prior to my diagnosis, I did not realize schizophrenia had dramatically altered my sense of reality. Because of this, I spent four years homeless. I remember when I first lost my apartment and didn’t consider reaching out for help. I thought I was on a special journey ordained by God. I had maxed out my credit cards a few months earlier during a humanitarian trip to Thailand, which I could not afford and which brought me little benefit. My parents offered help. In my paranoia, I strongly refused.
It was time to contact friends, professors, or one of so many other people in my life who would have offered me help. But, with no insight, I never considered it and pushed people out of my life. Instead, I preferred searching in garbage cans for food to eat. I had hit rock bottom and was entirely unaware. Despite my difficult situation, my delusions kept me going.
Nothing could help me, until I was finally picked up and taken to a psychiatric hospital. Although antipsychotic medication helped significantly, reducing my paranoia, delusions, and most of my hallucinations, I was unable to recognize that it had helped at all. Unfortunately, I suffered greatly from side effects. I went off my medication only a couple of weeks after my initial hospital discharge. I soon became psychotic again, which led me to end up back in a psychiatric hospital.
Hope for recovery
During my second hospitalization, a psychiatrist reached out to me with hope. He saw the “real” me underneath the heavy mask of sedation and blunt affect caused by my antipsychotic. He took the time to research my life, including my academic achievements at the university level and my history playing the violin—things I had excelled in and lost due to my untreated schizophrenia. He reminded me of the life I once had, and told me that, on medication, these things might be possible again, but without medication, I could expect a life of worsening chronic illness and hospitalization.
He also explained something that all patients should know on day one: if you discontinue your antipsychotic and start it again, it can be less effective, even at higher dosages. Repeatedly starting and stopping antipsychotic medication is a destructive pattern that can lead to long-term chronic illness.
I am grateful for this doctor and the lifeline he gave me, which led me to understand I was ill and needed long-term treatment. He extended to me the hope and desire I needed to rebuild my life. Thanks to him, 16 years ago, I overcame anosognosia, and to this day, I never miss taking my antipsychotic medication.
Reaching out to others with anosognosia
Today, in my work as a mental health advocate and nonprofit president, I frequently see signs of anosognosia (or lack of insight) in people struggling with depression, anxiety, bipolar disorder, schizophrenia, and related diagnoses. They are desperate for help, but believe nothing is wrong at all. It is difficult to convince them that there is hope in medication—hope for a better life filled with meaningful work, volunteering, school, hobbies, and relationships. The goals of treatment with antipsychotics and other medications and treatments are to restore insight, symptoms abatement, and recovery.
It is vital to educate young people about brain disorders in preparation for their teenage years and early adolescence. Early intervention is the key to exceptional outcomes.
Looking back
When I look back on the years, the risks I took while living with untreated schizophrenia scare me, especially my time homeless, living outside. I also mourn for the years that were lost to untreated mental illness. However, I am thankful for a restored life that would not have been possible without the support of my family and friends, and I am grateful for my medication and restored insight, which made possible the life I live today as a mental health advocate. Having broad insight through treatment is my most prized possession.
During this Mental Illness Awareness week, remember to never give up on a person struggling with anosognosia. It may take time, and insight may not be achieved overnight. But even with the sickest individuals, given the right treatment and care, understanding their illness and treatment plan can lead them to recovery.
Join me in educating yourself and offering compassionate support to those affected by a lack of insight into their diagnosis. They deserve it.
