Living With Schizophrenia; What it's really like
Reposted from: PsychCentral | Medically reviewed by Karin Gepp, PsyD — By Traci Pedersen
Until just decades ago, the majority of people diagnosed with schizophrenia lived the rest of their lives inside a psychiatric hospital. In most cases, remission was considered an impossibility, and hospital residents were only allowed to leave if family members accepted responsibility for them.
With the development of antipsychotic medications in the 1950s, schizophrenia outcomes have radically improved. Today, many people can manage their symptoms and live full lives within their communities.
Still, living with a severe mental health condition comes with its challenges, and for many individuals with the disorder, it requires daily coping mechanisms.
Living with schizophrenia
Rachel Star Withers, co-host of Psych Central’s “Inside Schizophrenia” podcast, lives with schizophrenia. Here, she explains how schizophrenia affects her daily life.
“I’ve learned to live with my schizophrenia pretty well. I have lots of coping techniques built into my normal life. So in a way, my schizophrenia doesn’t affect my daily life at all, and at the same time it is the center of it,” she says.
She notes that disorganized thoughts (confusion) – a primary symptom of schizophrenia – are something she needs to manage on a regular basis. To handle this, she has developed ways to keep herself focused.
“I am very proactive in constantly finding ways to keep me in line,” she says. “For example, my car is a stick shift because it requires more focus. I keep things arranged around the house a certain way that helps my brain think.”
“I am big on bright solid colors because patterns play on my hallucinations, so decorating/clothing/office supplies are bright and colorful. I use a highlighter to color code text — this helps break up the paragraphs so I can read easier.”
Rachel also has tardive dyskinesia, a condition resulting from prolonged antipsychotic use that can cause trembling or shaking. She says “holding normal pens and utensils can be a challenge, so I only buy thick pens and use utensils that have a thick handle.”
Are symptoms a daily challenge?
Symptoms vary significantly among people with schizophrenia. After starting antipsychotic treatment, some people experience almost no symptoms, while others experience them almost all of the time. Some experience more symptoms during stressful times and must take care to keep them under control.
A 2012 study from Italy found that 21.24% of participants with schizophrenia met the criteria for remission (no symptoms), and over 78% were either asymptomatic or only mildly symptomatic. Only 5.3% had severe symptoms.
Living arrangements Today, the majority of people with schizophrenia live within the community in a variety of living situations: with family members, with spouses, independently, or in group homes. Some individuals with very severe symptoms may reside in a hospital or nursing home. Others may become homeless. These individuals often live with an untreated illness. Research from 2020 reports that schizophrenia can lead to more time alone and fewer social interactions. Symptoms can also make it more difficult to stay focused on tasks or engage in “productive” behaviors. According to the findings, people with schizophrenia experienced the following (compared to those without the disorder):
significantly less total productive activity
fewer social interactions
more non-productive behaviors: watching TV, resting, etc.
spending more time at home
Rachel keeps a sense of humor regarding her living arrangements: “The biggest thing is I am super cool and live with my parents.” She goes on to explain: “I can’t live alone. I’m okay for a few weeks, but then I start to get weird. People with schizophrenia like to isolate themselves.”
How does schizophrenia affect work and employment?
Most people with schizophrenia are unable to work full-time, but it does help to engage in some work and stay relatively busy. Research shows that people with schizophrenia who participate in work activities have better functioning compared to those who don’t. For Rachel, schizophrenia affects her work life in several ways, the main one being that she’s unable to work a typical 9-5, 40-hour per week job. “I can do it for about two weeks then my brain starts to fall apart,” she says. “I also need to change what I am doing every four hours. If not, my thoughts start to run together.” “Another is I am bad at counting. Like, really bad. My brain starts twisting all the numbers around. What is wild is that I usually cannot tell — I think my math is 100% correct. Due to this I don’t work with money or credit cards at any job. I also have coworkers check my time sheets.”
Do delusions come and go?
In a 2001 study, researchers observed the daily functioning of people with schizophrenia and identified when delusions were most likely. A total of 48 participants with schizophrenia rated the intensity of their symptoms, thoughts, and mood states during various moments in their lives. On average, most participants experienced delusions less than one-third of the time. Delusional moments tended to occur alongside negative emotions rather than positive emotions. Being around family or acquaintances reduced the risk of having a subsequent delusion, while withdrawal from such activities increased the chances. The researchers conclude that daily life context seems to affect one’s chances of having delusions. Knowing what might trigger these symptoms can be useful for developing better coping strategies.
Tips for managing schizophrenia There are several things you can do to help you manage schizophrenia on a daily basis. The following simple habits can make a big difference in everyday life:
Make sleep a priority. Many people with schizophrenia have sleep difficulties. Going to bed and waking up at the same time every day can lead to a healthy sleep-wake cycle.Research from 2019Trusted Source also reveals that exercise can improve sleep quality in people with mental illness. You can find some sleep tips here.
Keep stress levels in check. High stress levels can trigger schizophrenia symptoms. If certain things trigger or worsen your symptoms, think of ways to either avoid that situation or come up with a good solution. (For example, Rachel drives a stick-shift car rather than an automatic to keep her mind sharp and focused while driving.)
Nurture relationships. Spending time with loved ones is another important activity that can minimize symptoms. Joining a support group can also be extremely helpful.
Eat a nutritious diet. This is important for everyone, but it can be particularly helpful for people with schizophrenia, as many live with other health problems.
Let’s recap Today, many people with schizophrenia can live independently, with family, or in supportive housing. This is a great improvement compared to just decades ago when many individuals had to stay in psychiatric hospitals due to a lack of effective treatments. Still, living with a major psychiatric disorder can bring unique challenges to daily life. Many people with schizophrenia have cognitive dysfunction and thus have difficulties working or staying productive. Support is available for these challenges. There are numerous therapies, classes, and support groups for helping with daily life. These include social skills training, cognitive behavioral therapy (CBT), and cognitive remediation to name a few. If you live in Vermont and are struggling with Schizophrenia, you can reach out to our team at Green Mountain Research Institute to find out about a clinical trial you may qualify for. The study is on a new add-on medication which may help. Eligible Participants get seen regularly by a Board-Certified Psychiatrist & expert team and get access to medication not yet available. There is no cost to participate, and no insurance is needed. Participants are compensated for their time and travel.
Find out more here, or call (802) 855-8368