People With Schizophrenia Describe What It's Really Like Living With the Disorder
Nearly one in 25 American adults has serious mental illness, which means odds are someone in your life is coping with anxiety, depression, OCD, bipolar disorder or another debilitating condition. Still, shame about mental illness — likely a holdover from when people wrongly believed such conditions were character flaws or a mother’s fault — can make it hard to seek help or even know what to say to those who struggle. To shine a light on the daily realities of mental illness, Good Housekeeping and the National Alliance on Mental Illness (NAMI) surveyed more than 4,000 people, and found that over a third had a close friend or relative with mental illness. In our special package on how to support loved ones with mental illness, women who live with these widely misunderstood psychological issues share what it feels like,
and how you can make a difference.
For people with schizophrenia, things that aren't actually happening can seem utterly — and terrifyingly — real. “When I was 17, I started hearing voices and seeing things that weren’t there,” says DeeDee, 31, of Tooele, UT. “I started talking back to them. They seemed like real people — at one point, they even told me I should go ahead and commit suicide.” Those hallucinations can appear in the form of voices, sounds, smells, or a bizarre distortion of physical reality. “My spatial abilities start to fall apart, so I would feel like I was stepping in holes, and things would look farther, nearer, bigger, and smaller, like Alice in Wonderland,” says Tina, 54, of Baltimore, MD, who had her first breakdown at age 14. “I would hear clicks and bangs and something that sounded like static on the radio.”
If you're thinking about suicide or are worried about a friend or loved one, call the National Suicide Prevention Lifeline at 1-800-273-8255.
Naturally, family, therapists, and friends, in an attempt to reassure people with schizophrenia or help them identify what is only happening in their minds, repeatedly tell them that what they’re experiencing isn’t real. This may lead those struggling with the condition to develop paranoid delusions that there’s a conspiracy against them, to reconcile their reality with what they're being told. “The brain misperceives things and then tries to create a story of how it all makes sense,” says Ben Weinstein, M.D., chair of psychiatry at Houston Methodist Hospital.
In addition to what psychologists call the “positive” symptoms of seeing and hearing things that aren’t there, people with schizophrenia also suffer from “negative” symptoms — things that should be there that are not, like a loss of interest in daily life, an inability to move or speak properly, a lack of emotion, energy, and motivation. They can also experience problems with attention, memory, and cognition. “It’s impossible to convey all the symptoms,” Tina says. “Schizophrenia doesn’t just affect your brain — your whole body feels sick. It makes me feel clumsier, and I can’t think clearly.”
Tina adds that even with medication, her symptoms come and go. "People with schizophrenia fluctuate more than most people," she says. And research has shown that stressful situations like a breakup or losing a job can trigger symptoms to get worse.
Though schizophrenia is a chronic and incurable illness, it is possible for people to live a productive life once they get treatment, says Dr. Weinstein. “We have a large population of homeless people with schizophrenia, but there are also people with graduate degrees who are functioning well in the community — you might not even know they have it,” he says, adding that most people with schizophrenia fall somewhere between those two extremes. He explains that a patient's ability to do well depends on many factors, including their compliance with taking medication, how long they experienced symptoms before starting treatment, their access to health care, and family support.
Schizophrenia is a chronic mental illness affecting around 1.1% of the world population (including 3.5 million Americans), according to the Schizophrenia and Related Disorders Alliance of America. Symptoms typically appear in the late teens to early 30s, and may have a genetic component, though an imbalance of certain neurotransmitters may also play a part. Some studies have even shown that the use of mind-altering drugs at a very young age can increase the risk of developing the condition. “Probably more than any other mental illness, schizophrenia requires medication,” says Dr. Weinstein. Second-generation antipsychotics such as olanzapine, clozapine, and risperidone can control the delusions, though they may have side effects such as weight gain. With the older generation of antipsychotics, many patients experienced movement disorders as a side effect.
Cognitive behavioral therapy can help people cope with the everyday challenges of schizophrenia, and family support is also crucial, says Dr. Weinstein. After many years of struggle, Tina began a course of medication and therapy, and her life slowly but steadily changed: "I was almost completely disabled for 10 years," she says. "But once I found the right doctors and the right treatment, I was able to get married, work part-time and volunteer, and take care of my parents as they aged," she says.
As mentioned above, having support from family and friends can make all the difference to someone with schizophrenia. Here are some ways you can be an ally:
Don’t dismiss their delusions: A person with schizophrenia hears those voices as clearly as if there’s someone standing next to them whispering in their ear, says Dr. Weinstein. Instead of getting frustrated and saying, “You’re crazy, there’s no one there!” acknowledge that they may be seeing something different than you are, and move the conversation to a different topic.
Encourage them to get out and about: Once they begin treatment, people with schizophrenia should be supported in participating in life as much as they can, going to school, going to work, and socializing, says Dr. Weinstein. “Remaining engaged with other people is very important and may even be protective,” he says. “I go to a clubhouse for people with mental illness, and I teach classes on helping others learn about their mental illness," says DeeDee. "I also go to a support group to talk about the things that bother me. But I will be on medication for the rest of my life.”
Help with the little things in life: Tina explains that people with schizophrenia may need help with even the most basic life skills, like getting dressed and getting to an appointment. “Navigating daily life is so hard. Never assume the person doesn’t want to comb their hair or go to the doctor. It’s hard to pick up the phone and schedule an appointment, to get dressed, to drive there. I'm smart, but it's hard for me to figure out a morning routine.”
Participate in treatment if possible: If you’re close with someone with schizophrenia, Dr. Weinstein suggests you ask her to sign a release form so you can communicate with the doctor, which can give you the tools to not only encourage her to continue treatment, but to provide the doctor with important info. “Family is usually the best source on how the patient is functioning, because they see the patient every day, while the doctor may be seeing them for 30 minutes once a month,” he says.
Don't give up on them: Helping a family member or friend with schizophrenia is a marathon, so make sure you take care of yourself while you're caring for your loved one. "My husband has been very helpful, he listens to me and lets me talk about what I'm going through without being judgmental," says Tina. "He’s willing to let me be alone if I want to be, but I always know he's there for me."
The COVID-19 crisis has made life more challenging for everyone — especially those who are struggling with a mental illness. Visit NAMI’s COVID-19 Resource and Information Guide for additional advice. For additional info about schizophrenia, visit the Schizophrenia and Related Disorders Alliance of America.
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