The following article gives you an inside look into the lives of folks living with schizophrenia.
Shout out to you all for being brave enough to share your stories.
Interested in reading more experiences? You can find the original thread at the end of the article.
“I was in college so I believe loads of stress and anxiety were the cause of it. I began first seeing shadow people. Some passing by on a whim. I can clearly remember one that looked like it was wearing a dress, going so quickly down the hall but with it came voices.
It was jumbled gibberish with high notes of laughter. Then came the name whispers. I got on medication soon after. During this time my anxiety wouldn’t let up.
Also saw many things imaginary things like a child would.”
“I dont hear voices – just noises and sounds. Like the faucet running, window taps, footsteps, doors closing and theres always a television on.
I think the first kind of event I guess was when I was 20 living with a roommate. Id been hearing a radio playing loud music outside in the middle of the night. It had been playing for an hour or two and I snapped. I jumped out of bed and tore through the house to get outside and ask them to turn it down. There was no radio and when I opened the door everything was quiet. My roomie was upset that I woke her up.
Though before that Id see shadow people when I drove. Theyd be jaywalking across the street. Ladies holding childrens hands, men pushing a shopping cart.
That and the darn cameras. I would always assume a room had a camera, in the vents usually. To me, there is always someone watching.”
I had an early onset of symptoms at the age of 12. I was stressed out for different reasons and lived with only my mom, who also has schizophrenia. It skewed my baseline a bit.
I don’t remember the exact first thing that changed, but there were milder early signs. If I stepped on the pavement in this particular pattern, my mom would get better. I walked very strangely as a result, turned around one afternoon and a group of boys from school were laughing at me. I could sense that someone was in the room with me, sometimes.
I’d turn on the television, and somebody would say something on the sitcom that matched up exactly with what I was thinking, like we were having a conversation. I’d open a book and there would be a very specific message that seemed like too much of a coincidence. Hallucinations in schizophrenia are usually auditory, but all of mine are tactile and visual.
I found lots of tiny pieces of paper stuck on my bedroom wall and when I drew closer to read them, they’d divide by 2. When I went even closer, they’d divide by 2 again. So I could never read what was written on them. I ended up as an involuntary inpatient at a children’s psychiatric ward when I was 14, which exacerbated the symptoms further.
I read a paper in my psychology minor where a group of researchers asked for childhood home videos of people who would later be diagnosed with schizophrenia. It was a blinded study, and researchers found that they could pick which child would grow up to be diagnosed with psychosis based on their motor patterns. The children tended to be clumsier and walk in a stereotypical fashion. Not surprising since the motor system is neurological. The gut system (enteric nervous system) is also neurological, and has been implicated in schizophrenia and more commonly developmental disorders like autism.
It’s kind of interesting, because it’s believed that the first signs of schizophrenia aren’t positive symptoms (hallucinations, delusions) but negative symptoms like withdrawal, anhedonia (feeling flat), social interaction issues. So perhaps there’s a step even before that.
I’m in med school now and a bit nervous about my psychiatry rotation actually, because I know patients in the public system aren’t always treated with dignity. Fortunately my cohort of students and the staff in my hospital placement are absolutely wonderful people who I trust will treat patients with respect.”
“The space under my bed began talking to me in my dreams, then not in my dreams.
The first thing I ever remember it saying was ‘don’t worry I’m not going to kill your mom.’ At the time, I was 8 or 9-years-old.”
“My first symptoms were visual and auditory illusions, specifically speech, I didn’t hear anything else at the start. I found out something is up during a conversation with my friends.
A person just randomly joined in the conversation, and since no one acted I thought I was the only one who didn’t know the person and rolled with it. A bit later my friends were concerned and asked me who I am speaking to.
I pointed to the newcomer and he gave a little wave back. Of course, I was the only one who ‘saw’ him. Ironically at the time I thought everyone but me was loosing it.
After being diagnosed with schizophrenia the guy accepted himself as a part of my imagination. Or technically I imagined a guy who accepted himself as my imagination. Psychology dealing with schizophrenia is mind boggling.
“My mom has schizophrenia and constantly talks to the FBI and Obama. She also talks to her doctor who tells her not to take her meds.
We have had her committed a few times because she would get very angry and disappear for a while day in her car and get lost. She also doesn’t believe my dad is her husband. I have a recording of her talking about it and it’s chilling.
Its a really unfortunate and a life stealing disease. I could go on for years talking about the different things she has seen and people she talks to. Im sorry for anyone dealing with this and please keep taking your medication. It does help.
Just know for anyone reading schizophrenia that has a friend or relative with this disorder, they believe everything they see and hear. It is as real to them as the air you breathe. Dont get mad at them but instead try and help.”
“I’ve been diagnosed as Schizoaffective (Bi-Polar type). This diagnosis basically means that symptoms of the two disorders present themselves simultaneously.
I knew something wasn’t quite right when my memory started to decline. Then my cognition got worse. I’d start walking somewhere and halfway there, I’d forget how I’d arrived at my location or why I was even there. I thought I had stumbled out of a dream.
Then I started giving too much weight to ridiculous thoughts and ideas.
Normally humans can dismiss ridiculous ideas like their thoughts that are conspiring with the universe to give people cancer, or that everyone is conspiring against you, but…sometimes it went a little too far.
I didn’t see anything explicitly wrong because I was still functioning well enough. I just chalked it up to my over-active imagination. I should have gotten help when I started seeing and hearing things. I would see shadow people lunging at me, following me, I even saw bugs on my skin. I took a certain episode before I got help.
Medication was a tremendous help and now I’m doing very well.
“I wasn’t social because voices told me people were plotting against me. After being in enough situations where I was forced to be social I noticed that a lot of people were actually pretty nice and the ones who weren’t didn’t care enough about me to do anything.
Once I realized that was a lie I started looking for other things to be suspicious about. I’m in a much better place now.”
“I’m on medication for schizoaffective disorder and it’s helped tremendously. However…
Before I was diagnosed I spent most of my days in fear of being alone in my home (even though I would isolate myself to my bedroom) because of the visual hallucinations. Some of them were in my peripheral vision, but I used to see hands snaking over the backs of furniture, like couches or beds. It would terrify me.
Also, as soon as I would begin to relax, especially before bed, I would hear voices and deep, loud growls. Once I had a friend staying with me and she didn’t respond to it and I realized that maybe something was wrong. It took 3 years after that for me to seek medical attention. I would think I was getting better because it would stop, just to return a few days or weeks later.”
“I am schizo-affective. It all started with depression, which in hindsight might be the deficit, that people who are schizo develop prior to positive symptoms or hearing things. I’ve always been the quiet boy. I don’t know if my quiet personality let me develop depression or if my depression caused my quietness.
I realized something was wrong early in my childhood, cause I always saw people do things all the time, that I wouldn’t have done or said in my wildest dreams. I, till this day can not figure out how to live a life you want to live or how to ‘dream.’ It’s not that I don’t want a happy life with a wife, kids etc. It’s just, that I can not ever imagine asking girls out or saying what I really think about that selfish, self-centered co-worker I have to sit next to or generally doing anything, that is meaningful to someone else or myself. But enough with the bragging.
The first time I heard voices was in my apartment and it was always whispers of neighbors. At first I wasn’t able to understand them. Then I thought I did. They sounded real, because by the loudness of their voices, it could have in fact have been my neighbors talking about me.
But one day I drove alone in the car and still heard voices. I turned off the radio to hear the voices and realized, that there couldn’t be no people whispering outside my car, since I was driving all the time.
That’s when I realized, I’m not only depressed and a socio-phobic but was completely loosing it.
It starts making me even more depressed thinking about, that I have no chance of ever escaping this disease and having to deal with it the rest of my life.”
“I’m not your typical case as I was 30-years-old when I started to hear voices. I was getting ready for a camping trip with the family when I heard someone say ‘You’re doing it wrong.’ I was in my garage by myself getting my boat ready and it made my blood run cold. I looked everywhere thinking someone was playing a trick on me but found nobody.
The next 4 months were a living hell at my house. I started seeing people in my house, at work and even outside. They would just stand in corners or walk by a doorway. I was literally freaking out non-stop. I thought it would go away but it didn’t.
I finally told my wife when the voices started telling me to kill her and my daughter. She was very supportive and even went to the doctor appointments with me. After a brief stay in the hospital, the doctors got my medication and it worked out. The voices and people stopped I was seeing stopped manifesting.
From time to time I will hear something or see something and now I know it’s not real, I just ignore them and move on with what ever I was doing.”
“I’ve heard voices all my life. At times, it’s been absolutely terrifying. I woken up many, many times in my life thinking that events had happened when they hadn’t at all. Only sometimes (even years later) I realize that something that I thought had happened never happened. I’m a songwriter and will wake up with songs fully formed not only versus but choruses, rhythms, melodies and everything complete.
For a long time I thought my brain was just running a song that I had heard at some point on the radio or whatever but I only after some time did I realize that these were originals and I just started catching them.
I remember waking up one time thinking that I had nervously pulled out all the hair on half of my eyebrow and I walked around for a week self-conscious, waiting for the hair to grow back. Only to realize that at the end of the week when I took a look in the mirror I hadn’t pulled any hair out at all and I must have dreamt it and thought it was real.”
Points are edited for clarity.