What Does It Feel Like to Have Schizophrenia?

Schizophrenia may be one of the most misunderstood mental illnesses. Though it affects about 1% of U.S. adults, many people don’t know much about it. Or they think they do, but their ideas about it aren’t right.

“The image of schizophrenia in popular culture is usually of the most severely disabled patients, who are often shown to be violent, and they are by and large not like that at all,” says Ben Weinstein, MD, chair of psychiatry at Houston Methodist Hospital. Schizophrenia also doesn’t mean that someone has a split personality.

It’s not a one-size-fits-all set of experiences. “If someone with schizophrenia has had good treatment and it’s well-controlled, they might seem a little ‘off’ at times, but you might not even know they have it,” Weinstein says. But for those without access to the medicines and care that they need, or those who stop their treatment, schizophrenia is devastating.

The exact mix of symptoms and how severe they are can vary greatly from person to person. It depends on their genetics, their environment, and whether they take medication or get other treatment such as therapy, Weinstein says. But there are some common things that people who have this condition tend to go through.

Getting Help May Be Delayed

Tina Collins, 53, of Baltimore says she was extremely anxious as a child and had her first breakdown at age 14. “When I first started having hallucinations, it was the late 70s, and there wasn’t a lot of recognition of mental illness, especially in young people,” she says. She says it took decades to get diagnosed due to the stigma that comes with the condition. “No one wanted to talk about it. Because I always had anxiety and other symptoms, my family would say, ‘Oh she’s always like that, she’ll be OK.’”

Matthew Dickson, now 47, of New Brunswick, Canada, started having symptoms when he was 17. (Schizophrenia usually starts in the late teens or early 20s, though it can also come on later.) He didn’t know what was happening to him. “I told people about some of the feelings I was having, but I had no idea what mental illness was. I still managed to go to class and even bicycle across Canada, but at the end of the last term of my last year at university, it hit me hard.” When Dickson started to worry that he would kill himself, he finally sought help and started treatment.

Because there’s no test for schizophrenia, the first step in diagnosis is to eliminate other conditions, says Russell Margolis, MD, director of the Johns Hopkins Schizophrenia Center. He notes that some of the symptoms can be similar to those of depression and dementia, or that another illness could be to blame. “There can be a mood disorder or a delirious state brought about by an acute medical problem,” he says.

To be diagnosed with schizophrenia, someone must have problems with daily life — at work or school, in relationships, or tasks like getting dressed and taking care of themselves — and also have a cluster of three types of symptoms: positive, negative, and cognitive. And in this case, “positive” and “negative” don’t mean what you might think.

What Positive Schizophrenia Symptoms Are Like

These simply mean experiences that someone with schizophrenia has, such as hallucinations, delusions, unusual physical movements, and illogical thoughts. “These are as real to the person with schizophrenia as it would be if someone came in the room and started talking to you,” Weinstein says.

Collins describes her hallucinations before she started treatment. “The room would turn dark and people would distort and start looking demonic,” she recalls. “If I looked in the mirror, my face would look demonic — I thought I was the ugliest person in the world.” Her vision and hearing started to change, making it extremely hard to make sense of the world. “It was like an Alice in Wonderland,” Collins says. “Everything was getting bigger, smaller, louder, quieter; my ability to process information coming in through my senses started breaking down.”

Dickson says he never saw any visions but he sensed so much “static” in his brain that he couldn’t focus or concentrate. “It’s like watching a movie where it’s a war zone, and bombs are going off, and it’s utter chaos.”

Both Collins and Dickson describe living with constant noise in their head. “I heard a lot of clicks and bangs. I took it for granted that this was the world was like, and everyone else knew how to function in it, but I couldn’t,” Collins says. She also recalls seeing a “shadow man,” a common hallucination.

Hallucinations “are often auditory [something you hear] but can be accompanied by odors, visions, and tastes,” Margolis says. As the brain tries to make sense of it all that false input, it may create a narrative that some outside force — such as the government, a family member, or even a chip implanted in the brain — is out to get them, though none of that is true.

Positive symptoms can also include “trippy” delusions. “In my worst year, I remember going for a walk and thinking, If I just stop walking right here and then stand still and turn around and walk in the other direction, I can go back in time,” Dickson says.

What Negative Schizophrenia Symptoms Are Like

While the positive symptoms may come to mind when you think of schizophrenia, the negative symptoms are often the most debilitating, leading people to drop out of work, school, and everything that matters to them in life, Weinstein points out.

“Negative symptoms are the absence of a certain oomph in life, the absence of normal interest and drive and motivations,” Margolis says. “At its most extreme, that can be someone who barely talks, who just sits in home doing little or nothing.”

“When I looked at the world around me, it was like I was watching TV,” Dickson says. “It feels like you’re totally cut off.” He remembers reading a description of the 2001 movie A Beautiful Mind, about the mathematician John Nash, who battled schizophrenia for decades: “It said that Nash lived a ‘ghostlike existence,’ and I definitely can associate with that. You feel helpless, you lose your sense of self.”

For Collins, her inability to interact with the world was linked with her perception issues. “If I tried to walk across the room, it would feel like my feet were falling through the floor,” she says. “The boundaries keep shifting and dissolving so your ability to function physically, cognitively, and emotionally is totally gone. I couldn’t even speak for years. It was like my voice got swallowed up deep down inside. I called it being in the black box: I wanted to get out, but I couldn’t get out of the traffic jam that was in my head.”

What Cognitive Schizophrenia Symptoms Are Like

Someone with these symptoms may have trouble concentrating, focusing, taking in new information, and using that information. Their brain processes information more slowly, their memory declines, and they often have trouble reading and understanding social cues, Weinstein says. Though these symptoms can be made even worse by the brain “traffic” from positive symptoms, cognitive decline is a symptom all on its own, Margolis says.

“Even getting dressed was a very complicated process for me,” Collins says. “It’s like a traffic jam of information going in and out of your brain, so it’s like everything is always new, you don’t remember the process.”

Dickson describes feeling like his brain was under constant assault. “My analogy is if you’re playing a game of tackle football with some friends and the ball is coming to you, can you really do algebra in your head at that moment? I was a fairly smart guy, but when you’re sick with what I had, you really can’t do a lot of deep intellectual thinking.”

Recovery Through Treatment

Though there is no cure for schizophrenia, medication and therapy can manage the symptoms. Consistency is key: without treatment, the symptoms come right back. This can lead to an extreme downward spiral for those who go without the medicines and care they need.

After many years of treatment, Both Collins and Dickson have come out the other side.

“I was lucky to find doctors who believed I could get better,” Collins says. “It took a good 10 years of therapy and medication to really develop the skills of daily life, but you can do it. I still have residual symptoms, but I don’t have hallucinations anymore.”

Dickson says his recovery was a long, slow process, helped by the fact that he desperately wanted to get better and was careful about always taking his medication. “Every single week for the last 25 years I’ve noticed a gradual improvement to my health, and I’m finally back up on my feet again,” Dickson says. He’s decided to pay it forward by starting a nonprofit to help bring mental health resources to people in third-world countries.