The stories of those living with schizophrenia can show what it’s like to live with the condition. Reading personal stories can also help to reduce stigma related to mental illness.
To live with schizophrenia requires one to take an active role in managing their condition. But real stories of people living with schizophrenia show that it isn’t always easy.
It’s important to note that everyone might experience schizophrenia differently. So, it’s best not to compare these schizophrenia stories to others.
Instead, each person living with schizophrenia has their own unique recovery story.
Schizophrenia is a mental health disorder consisting of positive and negative symptoms.
Positive symptoms of schizophrenia are:
- hallucinations
- delusions
- changes in thinking and perception
- behavior changes
The negative symptoms include:
- speech difficulties
- inability to experience pleasure
- lack of motivation
Experiencing symptoms of schizophrenia
The first story might shine more light on these symptoms. In the 2018 issue of the Schizophrenia Bulletin, an anonymous source describes them by saying:
“I didn’t receive medication for psychosis until after taking tricyclic antidepressants for several years. Although I am clinically depressed at times, distinguishing between my depressive symptoms (which include anhedonia [inability to experience pleasure], hopelessness, and active social avoidance) and the negative symptoms associated with my psychotic illness (which have flat affect, emotional withdrawal, passive social withdrawal, and avolition [lack of motivation] is more of an art than a science.
“I also experience vivid positive symptoms, including paranoid thoughts and auditory and visual hallucinations. Interestingly, because I have not been able to reality-test, I am not burdened with the disordered thinking and speech that are generally associated with a formal thought disorder [disorganized thinking].
“I am, however, increasingly challenged by cognitive deficits, including difficulties with my working memory and visual memory, which I find particularly distressing because of the impact that this illness-associated decline may have on my ability to continue functioning at a high level.”
Symptoms of schizophrenia
In her article My Triumph Over Psychosis: A Journey From Schizophrenia and Homelessness to College Graduate, Bethany Yeiser states, “My return from Africa marked the beginning of my senior year of college and the emergence of my thought disorder.”
Yeiser continues by saying, “My mind had become like a broken record as I thought of nothing but international poverty. I could not leave my feelings behind, and these feelings turned into a cloud inside of my mind.
“This debilitating obsession with global poverty left me unable to study, and I lacked the necessary focus to work the most straightforward job. I could no longer move on as I had so quickly done before.
“As I failed my college classes, I was convinced I would radically change the world, like Mother Teresa. Over the next few weeks, I believed that failing my classes would actually work in a positive way to help me succeed in life (remembering that Albert Einstein failed math classes).
“Rationalizing my inability to study, I determined that neglecting my classes was the wiser decision. This was the beginning of my grandiose delusions.”
A person with schizophrenia may hear voices. With these schizophrenia stories, hallucinations are a part of their symptoms. In 2019 Betty S Ruoss, who was diagnosed with schizophrenia in 1976, contributed an article to the Schizophrenia Bulletin.
“I was driving home from work one day when I heard voices inside my head. It wasn’t just one voice talking—it was many in a low tone. I couldn’t distinguish what they were saying. It sounded like a radio between stations, with a lot of static. Time went by, and the voices became clearer. I was still very paranoid and delusional.
“I thought people at my job were all judging me to see how well I did my job. I felt they could read what I was thinking and that I could talk to them without opening my mouth,” says Ruoss.
Cognitive behavioral therapy (CBT) and medication are often the first steps in managing schizophrenia.
Jason A Jepson wrote an article to describe his experience with navigating therapy treatment in a 2018 issue of the Schizophrenia Bulletin.
“I have had four or five psychiatrists or psychologists who have treated me. In the early days, I felt no connection with my therapist. Over time that changed as I found the ones who allow me to be myself.
“Seeing the same therapist over a long period of time has created trust and acceptance in our relationship. I have a friendly relationship with my therapists, which goes a long way toward building trust. I have a regular schedule for seeing them and getting bloodwork and meds.
“This routine helps me not to be confused. I even get appointment letters to remind me of the date and time of my next scheduled visit. My therapists give me positive support and answer all my questions.
They empathize with my concerns and quickly offer advice when I ask for it. They also challenge me to be responsible by being as independent as possible; by keeping my appointments; taking my medication as prescribed, and always checking the evidence when I hear sounds or voices that disrupt my thinking.”
Choosing the right medication
With medication, you might have to try a few different antipsychotics or vary your dosing to find the right regimen for you. Ruoss recalls the challenges that come with this process.
“After I was released from the hospital, I still took Seroquel [quetiapine] that one psychiatrist prescribed. I gained so much weight, I was unrecognizable. I took it for years, then stopped on my own.
“Afterward, I was placed in three other hospitals — for 2 weeks to 2 months. These hospitals gave me Celexa [citalopram], Geodon [ziprasidone], Depakene [valproic acid], Valium [diazepam], Haldol [haloperidol], Thorazine, and Zyprexa [olanzapine]. None of these meds controlled my symptoms.
“It wasn’t until a 2010 hospitalization, I was diagnosed with paranoid schizophrenia with chronic depression. I have been prescribed a combination of venlafaxine [Effexor] 75 mg, risperdal 3 mg, and trazodone [Desyrel] 50 mg, which helped me tremendously. I have had no side effects and stopped being delusional and paranoid. And I don’t hear voices, and I am not depressed.
“I am grateful to the psychiatrist who helped me. After more than 40 years of psychosis, I can now say, I feel better than I have ever felt in my life. I feel like a new person. Being on meds that work for me has helped me to see just how out of touch with reality I had been in the past.”
Discontinuing medication
If you want to stop taking your medication, discuss this decision with a mental health professional. It’s important that you don’t discontinue taking your medication before speaking with a licensed professional.
With the right support, you can safely stop taking your medication and find the right treatment plan for you.
First-person accounts might alter the public’s perception of mental illness.
Sharing these stories may help humanize the mental health condition. It may also help reduce any stigma that may be attached.
If you care for or live with a person with schizophrenia, support is available to help you better understand the condition. You can also learn more about schizophrenia at our schizophrenia hub.
You may also consider visiting Psych Central’s mental health support today.