People Are Opening Up About What It's Like To Have Schizophrenia, And It's Incredibly Interesting

I recently came across this question on Quora: "What is it like to have schizophrenia?" The thread led me to many other related questions where people with schizophrenia shared their various symptoms and experiences. The folks who responded were incredibly honest, brave, and vulnerable, and I hope those reading their words walk away feeling more understanding, empathetic, and enlightened. Here's what people shared:

Content warning: This post contains intense discussions about mental illness.

1."For me, I don't usually have visual hallucinations, which is why I thought I didn't have schizophrenia for a LONG time. But imagine you're sitting in an empty classroom, as usual, and two girls walk in behind you. It's normal, so you don't turn around or hardly notice it. They're talking for a while; then it turns to you. They talk about how awful your clothes are and say things they shouldn't know about you. You get fed up and turn around, and it's nothing. No one is there. Something I struggle with when I don't pay attention is babbling. My mind flips topics faster than I can channel surf, and my mouth can't keep up. I don't even form whole sentences, and while talking, I can sound something like, 'That pizza place had, OH MY GOD, my dog once, today I was up, so it's weird when Netflix ate my breakfast, she was a bitch,' and no one understands except me."

"Delusions: For a solid two months, I thought my friend had a cat named Leroy, and it wasn't until I asked her about it that she told me that she had never had a cat and was actually allergic. I was also convinced for a month that I didn't have a uterus. It's weird, and I don't understand it. I'm constantly second-guessing myself, so every moment is FUN."

—Anonymous

2."For me, it feels like I'm in a puzzle, and I need to figure out the riddles everyone around me is subtly telling me about but won't say directly (so as not to give me the satisfaction of knowing what they plan on doing). My life is at risk, and I cannot ask them about it because they'll just lie. I don't even know who's 'in on it' anymore, and quite frankly, I'm getting pissed off, but I'm terrified. What if they win, manage to kill me, and get away with it? I don't even know why they want me dead. These are my friends and family; even strangers seem to know that everyone's planning my murder. If I listen carefully, they give subtle hints about which part they're playing. But I need to be smart about this, though. I cannot tell them I know because they'll change tactics."

"I don't want them to change because I'm so close to figuring out their next move, and I AM going to beat them to it this time. I'd kill them if I could, but what if I'm wrong and they're not trying to kill me but are just disappointed in my life choices? What if everyone is tired of having to help me out of sticky situations? Maybe it's just because we can't allow any more failures here. Why snipe me? Why not just drive by and kill me and get done with it? Why do they insist on toying with me first? This is what's pissing me off. I'll miss them, though, and I know they'll miss me too.

There you go. There's my day-to-day life. It's getting easier to deal with, and the thoughts are fading, but the voice in my head is NOT mine. I don't speak like that or think like that."

—Daniel M.

3."Honestly, the only way I would describe it is that you are eyes in a body that lets the things you see control you. It is NOT fun. I wake up in the morning to at least five people in my room — faces I've never seen before. They ignore me as I walk out of my room. When I light up my morning cigarette, I hear them say, 'She's going to die before we get to her,' which is terrifying to hear. Then they say, 'We wait until she's asleep, and we perform the procedure.' What procedure? What are they talking about? When I get back into my room, they are FBI agents. They tell me to leave but don't go outside."

"I also see human bodies with animal heads that tower over houses and stare at me from a distance. I see bodies hanging from doorways. I see ceiling fans spinning on the grass. I see black hands coming out of faucets, drains, mirrors, and walls. I hear a 'robot voice' that keeps me up at night, saying things like, 'My programming tells me you love me! You can't leave me, you are mine, you can't leave me, YOU ARE MINE,' and things in that context.

But my main, most important hallucination is Jack. He is a tall, well-kept man with blondish-white hair, a top hat, and an orange suit. He was my very first hallucination. He was evil; he was my worst nightmare and more. After these six years, he has taken the form of my friends, lovers, and family. It's so hard to look at him. But he also is always there when I have panic attacks or when I'm anxious, paranoid, or worrying; he makes sure I am safe. I refuse to talk back to my voices. I don't want to start falling into their shit. Schizophrenia SUCKS."

—Cyenna M.

4."It's a slow, draining, isolating spiral. Everyone's experience is very different. In the early stages, it's so minor it becomes normal. You don't quite notice how much worse it's getting over time because it become your new normal. It started small, thinking friends and family were calling me things when passing by or talking about me within earshot. Of course, when confronted, it was all denied, which created an increasing sense of paranoia and distrust. It really starts to put a strain on your relationships. It's so small and infrequent that it can be passed off as mishearing what someone said, and that's the new normal. I couldn't tell how much worse it had gotten because of that. It went from hearing and thinking my friends and family were talking about me to thinking they were plotting to kill me. It made it hard to go out in public, make it through a shift, or even be alone."

"The delusions aren't always the same, but the same one can persist for long periods, making it hard to trust anyone. You don't really notice what's going on or how bad it's gotten until it has a massive impact on your life. It runs in the family, so after a certain point, my friends and family started assuming that's what it was. I was able to start treatment and get help a lot earlier than most people. It was about a year before I got treated for small accounts of increasing paranoia. Eventually, you're convinced you're speaking to the internet, constantly being watched, can hear people's thoughts, speaking with God, etc."

—Trent A.

5."I was diagnosed with schizophrenia four years ago. In my first episode, I believed I was Maitreya, the fifth reincarnation of Buddha. Shortly before that, I had discovered the notion of enlightenment and believed myself to be so. I saw signs in everything I came across. The colors red and yellow, whenever they appeared, verified my belief. The number 47, also. I barely slept, and my sex drive was higher than normal. I spent an entire day in NYC with my dad, walking around like I was the savior. Several people took notice of my behavior and treated me like I was a king (no joke). This only added to my delusion. Schizophrenia, when experienced through grandiose delusions, feels like the best drug you could ever take. You feel like a god, and nothing can harm you. Your mind is active the entire day. Everything is urgent."

"When I was finally taken to the hospital, I believed the doctors would recognize my status and fly me to the Pope so we could plan world peace. You're totally inside the realm of your mind. Reality ceases to exist. Whatever you think becomes a reality. Some other people with schizophrenia experience the opposite; they hear violent voices and are convinced they are being followed. Think of nightmares. When you wake up, you're still in it.

I no longer carry the delusion that I'm Buddha, but once in a while, I think about it when I'm down. I believe having grandiose delusions is a defense mechanism against low self-esteem for people prone to schizophrenia. Medication helps. I can no longer feel the highs that come with my grandiose beliefs. It's a blessing. I've done many foolish things in my schizophrenic state."

—Anonymous

6."Well, I have schizoaffective disorder. In the beginning, it felt like a fog. I wasn't able to concentrate, felt depressed, and walked slowly (psychomotor retardation). Then, filling out papers and sending faxes became really hard. I became homeless as a result. My mind was scattered. When I spoke, my brother said it was like solving a puzzle. I also laughed at inappropriate things and said very insensitive things that a nice, civilized person wouldn't say. The VA social workers rolled their eyes and thought I was making stuff up to get compensation. Well, I went through years before getting treatment and dealt with my family saying things like 'snap out of it.' Then, the actual psychotic episodes began. They were about me getting physically tortured by the CIA while they were spying on me, and a foreign government hacked my phone. I feared for my family's lives. I thought our brains would explode."

"Later, I couldn't sleep in my room and was taken to the hospital, and they strapped me down and tranquilized me with a shot. I couldn't sleep in my room in the hospital because I was afraid of the window, so they tranquilized me with another shot. I was better after that. A year later, I thought aliens or spirits were pursuing me, and I still feel that way after taking medication.

I don't know. I don't feel smart — like my use of words isn't advanced. I've taken IQ tests and scored high on them, but I don't know. I feel less mature (I'm 33) and worry that I'll be boring, like those women who dress conservatively on a Sears poster. I don't think I'll be having any kids. I don't even have a partner yet."

—AK A.

7."It's like living a nightmare, only you are awake. Or, should I say, you're unable to close your eyes? Voices that are as real as a person talking next to you. They watch your every thought and action and comment on it in a good or bad way, and it works like a chain reaction, inviting more and more conversations. And all this is happening within. In my case, things went so bizarre that I could slip into parallel realities and have conversations or experiences that never really happened. To be watched at your soul level can feel incredibly naked and vulnerable. Accountable for every little moment of your life. But there is hope at the end of the tunnel. I am in 99% recovery now and living a productive life."

—Ashish K.

8."My diagnosis was mild schizophrenia. I first ended up at a psychiatrist eight and a half years ago when I was 19 and studying mathematics. At first, I was diagnosed with recurrent depressive episodes, but in a few months, it was changed to mild schizophrenia. I never needed to be taken to the hospital; I was just miserable in some special ways. I know some people who've had it much worse. They've tried to jump from windows because voices said so or attacked people around them because they felt like everyone wanted to harm them. I know I have it easy. I'd say I don't get voices in my head. The closest I've ever come to auditory hallucinations are the few times when I've been 'arguing' with someone who's actually in the next room and is angry with me while I'm vacuuming, blow-drying my hair, or making other loud noises. Usually, it ends with a very confused relative/friend coming to ask who I'm talking to."

"Supernatural ideas have managed to get on my nerves more than I have liked. I tend to be vulnerable to magical thinking. There are times when I suddenly 'feel' like someone close to me is dead or in danger. I can't calm down until I have contacted them to ensure they're all right. Sometimes, I've also had some premonitions or felt like I have other supernatural powers. Even if I know it is not real, it feels real. It has become easier to ignore such things every time they fail to come true. It also helped that I stopped being religious.

What's still left are the negative symptoms. My thinking is often chaotic. It sometimes shows on the outside as incoherent speech or, more usually, a surprising ability to derail conversations by wild associations. I wonder if it also accounts for my ability to learn things faster than most (though it is much harder to explain things to others later). Associations that are self-evident to me usually are not so to others.

Also, there is a loss of motivation, so I am a miserable loser, and I'm not doing anything about it (sarcasm)."

—Anonymous

9."When I'm experiencing positive symptoms, I feel like I'm the main protagonist of a good novel — a novel you should read without any critical thinking. For instance, I once woke up during the night and couldn't move. I was in the same position as Christ on the cross, and I was convinced that I was talking with God. I was experiencing a lot of sensations: warmth, cold, and pleasure (A LOT; I've never experienced such a thing again). I thought I was the first to discover the solution to the 'riddle' created by God, Jesus Christ, and the Holy Spirit. Then I asked God when I would be able to play with him, and he told me we already did. Then, I saw vivid memories of playing poker with my father and my brother and playing Mario Kart with my brother. He also told me that I was very lucky to have my grandmothers, who were very brave (both lost their husbands)."

"I asked him if we were alone in the universe, and he said yes, but we'd let everybody think the contrary. My life was suddenly more exciting (as you can imagine), but I asked him if I could also live the life of Harry Potter and Superman, and he told me, laughing, 'Of course. Everything you want.'

Finally, I asked him if he existed, and he said yes, no, yes, no...yes. And then I fell asleep. The day after, I was convinced that I could communicate via telepathy. And my parents had me hospitalized.

Another time, I walked in the woods at night, amazed by the beauty of the lake, the trees, and the sound of the wind. I got rid of my shoes and put my feet in the mud. Then, I saw a rabbit and ran after him, convinced I was in some kind of Alice in Wonderland world. Then I sat on a bench, and a hedgehog came towards me, and I touched it. Then I went back home with my filthy shoes.

Another time, I left the house convinced that I was a spy for Google, so I threw away all my credit cards and left with only my Android phone, aiming for their headquarters in Paris. During my walk, I changed my mind when Google Maps showed me a map of the UK. My attention went to some city in Scotland. I remembered a PhD offer about optogenetics tools (I was recently awarded a master of engineering degree) that I had seen on the web a few days earlier. So, I decided to follow the highway. Then, heavy rain began to fall, and I had this urge to moonwalk until I reached my goal. I've never moonwalked that well. Later, some policemen found me on the side of the road and began asking me questions, but I wouldn't answer because I was convinced I was John Doe, the hero of a TV series, so I wasn't supposed to remember who I was. They didn't take very long before sending me to a hospital.I have a few more of these anecdotes, but I would never share most of them because they are too humiliating.Now, the negative symptoms. It's a lot less funny. It's pretty simple, actually: I lose all motivation. Imagine having to shower and feeling as if you have to climb Mount Everest or learn the Bible by heart. That's what it feels like. I'm currently experiencing this phase. It's been months since I last wanted to see friends, learn things, and find a job. My life is empty; I do nothing, and I just hope that my brain will find its balance one day. I found the motivation to write this because I think society is very rude to people suffering from psychiatric issues. We aren't all violent psychopaths. It's a small minority. I'm not lazy, either. I have a disease. And no, unfortunately, drugs aren't the quick fix everybody thinks they are."

—Anonymous

10."I was labeled as having paranoid schizophrenia in 1992. In 2006, I took a job working in a group home that housed adult men and women who had also received the label of schizophrenic. Living with schizophrenia can be challenging at times. Although I'm very stable on antipsychotics, to avoid future psychotic episodes, I still deal with paranoia and auditory hallucinations almost daily — not as severely as pre-medication. I also have years of therapy and experience under my belt, which helps me cope with those two symptoms. I also have days when I can't recall words I want to express in my conversations with people. It's kind of like having memory recall disorder. I know the word, but my mind spits out another word that is completely unrelated to what I'm saying. It really confuses people, but once I bust out laughing about it, they laugh with me. I am comfortable laughing about my strange behaviors."

"This was not always the case. When I was younger and had no idea what was going on, I lived in a constant state of terror. The voices and delusions were overwhelming. There were always conspiracies going on. I could trust no one. I would run away to hide for days at a time. I was a complete burden to my family.

Now, most people don't have any idea that I have a mental illness. I live like everyone else does: I cook, clean, wash laundry, go grocery shopping, stress about bills, etc. I volunteer in my community in a group effort to change the homeless situation here. I'm happy and prosperous. Living with schizophrenia is not that much different than unlabeled people's everyday lives.

I went to work in 2006 in a group home, as I mentioned above. I was a case manager for 22 adults labeled with schizophrenia. Being around those beautiful souls was one of the best experiences of my life. They were in a group home situation because their schizophrenia was very severe, and they were unresponsive to medications. Each one suffered from a combination of symptoms and behaviors unique to each individual. Most were unpredictable in their behavior day to day. Some good days, some bad. At first, it was hard to communicate with them. They did not know or trust me, so they would not open up and share. Eventually, I was able to connect with every one of them. One thing they all had in common was a higher-than-average intelligence. One of my male clients actually tested as a genius. They all had great senses of humor. The style of humor differed from case to case, but it was there.

Some exhibited behaviors I couldn't comprehend, but I wasn't a trained psychologist or anything. For example, one client kept all his hair trimmings and nail clippings in a jar beside his bed. He finally explained to me that those were a part of his body, and he needed to always keep them close and safe.

These people were never violent or mean. They were sweet and thoughtful in their own ways. They enjoyed different activities, were curious, and seemed to enjoy their personal contact with me, other staff, and each other. Communication was sometimes tricky, but they got their meaning across if you were patient.

In the two years I worked there, I learned a lot about myself and felt great satisfaction when I saw that I had made a positive difference in their lives. Take care, and good luck on your own journey."

—Lisa M.

11."I had my first episode at 19, over 30 years ago. The hallucinations can be annoying, frightening, or sometimes amusing. The fully psychotic episodes, which usually require hospitalization, are exhausting and frightening to the sufferer and the people around them. Symptoms of schizophrenia are classed as either positive (extra things the sufferer has), like hallucinations and voices, or negative (things the sufferer is missing), such as lack of concentration, motivation, emotional naturalness, or ability to enjoy oneself. I find that the medication settles most of the positive symptoms but does very little to address the negative symptoms. The worst one is a lack of motivation, so I cope by sticking to a routine and lists. Adding anything new is always difficult, and I am not very spontaneous. Goals all seem miles away, even in baby steps."

"Anhedonia (lacking the ability to enjoy oneself) is the next worst, as it is also harder to set goals when you cannot enjoy your achievements when you reach them. It's close to depression in the lowered level or lack of enjoyment in everyday experiences or treats that you experience.

Lack of concentration means I have to try and do things in short bursts and become persistent instead of being able to sail smoothly through something a healthy person could.

I've realized that people pick up on my lack of naturalness in emotional expression, which makes me a bit wary of socializing. However, I have come to grips with it more these days and tend to accept it as one of my quirks. I don't worry so much about what others think, relying on my quiet charm and wit to balance that out.

A major effect of schizophrenia is a combination of lack of concentration and hallucinations bouncing around in your head, which means paying attention to something in real-time, like television, a conversation, or driving, can be very difficult. My family still isn't used to me asking for them to repeat things (or else my responding a bit inappropriately as I am not quite in the frame), and I remember how amazing it was when a medication change worked enough for me to finally be able to watch television again after a decade without it. Reading books is also a slow labor of love. Reading news items on the internet, which are short and sweet, is one of my few pleasures relating to concentration.

Mindfulness meditation and giving up coffee have both helped me in several ways. My anxiety is lessened, hallucinations are less frequent, and I feel my concentration has improved, as has my ability to pay attention to the real world at the moment. I strongly recommend it to anyone!

One of the major difficulties is being poorer than peers and siblings if the years/episodes of psychosis have impacted your career or working life. It can also lead to resentment or depression. However, it can also make you thankful for what you do have, other people's understanding, and family and community support.

Accepting yourself as disabled is also more difficult when you do not have any visible ailment. I still ask myself questions as to why my life has turned out like this or is a certain way today when the answer is: because you have a disability. My youth was full of amazing promise. My adult life is a patchwork of tears.

Finally, living through these hardships can make you very helpful, caring, and concerned about others. Many people with schizophrenia are really lovely people!"

—Anonymous

12.And: "I'm a treated schizophrenic now. However, I did not realize I was sick for a long time. I can only tell you what it was like for me before I received medical treatment. My first experience was when I was at work; I'd hear people laughing at me. I actually went to my boss and complained about the people making fun of me and snickering behind my back. It made me very sad, and I didn't want to go to work or out in public because I couldn't figure out why people kept laughing at me (even though I could never physically see anyone laughing). I also started hearing my ex-husband and his mother's voice come out of my computer. I thought my ex-husband had planted some kind of device in my computer and was playing tricks on me. I called the police, who advised me that there was no possible way and said I should see a doctor."

"This upset me because, to me, these things were real, and no one would listen to me. These things were happening; people were messing with me, and no one would help me, not even the police. I started to get very depressed and felt like I was some kind of joke to the world. Then I began to see things in the TV. I'd watch a movie, and the girl would have my hands. I would know they were my hands because they'd have my exact color polish with the same nail missing. Plus, we all know what our hands look like, and those were definitely my hands! Or, I'd watch a movie and see my dad's smile on the character's face. Or, I'd be watching a show and see a pair of pants that my friend was wearing that day on an actor on TV.

This was one of the most frustrating times in my life because no one would see what I was seeing, and I didn't understand why nobody would pay attention to what I was saying. I believe this went on for about a year and a half before I finally started hearing the voices of people I knew. There were five different voices of people I knew who were still alive in my head. They were always degrading me and making me feel like a horrible person. That's when I realized that I might be sick. I knew hearing voices in my head wasn't a good thing and wasn't normal. It still took me a few months to get better on the medication, and I started to realize that those were delusions and hallucinations, and those things really did not happen.

I have been under medical care now for many years. Even though I know in my mind that those things did not happen, the hurt I felt in my heart from those things is still real. I don't think I will ever heal from the things I heard in my head or the torment I felt when I left the house to go out in the always-snickering world."

—Sarah R.

Thank you to those who shared their stories and perspectives. I genuinely hope these anecdotes leave readers feeling more informed and empathetic. If you live with schizophrenia and would like to share anything, you're welcome to do so in the comments or through this anonymous form.

Note: Submissions have been edited for length and/or clarity.

The National Alliance on Mental Illness helpline is 1-800-950-6264 (NAMI) and provides information and referral services; GoodTherapy.org is an association of mental health professionals from more than 25 countries who support efforts to reduce harm in therapy.