People With Schizophrenia Reveal When They First Realized Something Was Wrong
Like most mental illnesses, people have misconceptions about schizophrenia based on what they've seen in movies or on TV.
To clear up some of the misinformation, Reddit user GrumpyYorke asked "People that have been diagnosed with schizophrenia, what was the first time you noticed something wasn't quite right?"
Here are people's own stories of their experience with schizophrenia and related disorders.
I was in college and I recounted to a teammate about a person who visited me sometimes and they were trying to kill me - this person floated and looked half dead. It never occurred to me that this was a strange thing but the look of shock I was given was really curious to me. It made me think they must never experience something like that. That was the first time I thought maybe something was up. I was referred to a psychiatrist but I didnt talk about the visitations because I didnt think it was any different then talking about people on my sports team. I also started to notice people mentioning that I never talked. It actually took another five years, and an experience I had when I attempted suicide, for me to realize that my experiences and my emotional state were not experienced by most people and that I needed to get help.
I used to think I could see people that weren't there. The girl from the ring used to stand in the corner of my room and point at me while I tried to sleep. That and an old guy that would show up from time to time and wave. I also thought my mother was trying to poison me with her food, so I taught myself to cook (for other reasons as well) to make sure the food was safe.
I wasn't diagnosed as schizoaffective until I had my first psychotic break a couple years ago when I thought people were watching me through the television and following me everywhere I went. I still fight with the paranoia on a seemingly daily basis and as such I don't leave the house for usually more than an hour to go to the gym or twenty minutes to go to the store a few times a week. It doesn't help that my dad built spy software for the government when we first moved to the us. It makes for a shadowy group of people potentially working for the government following you around asking you very personal questions when you're sitting at a cafe almost plausible which is just f'ing terrible to deal with when you have to question reality all the time.
I was in the prodrome phase which was early signs. I was constantly going to doctors complaining about suicidal thoughts, anxiety, stomach problems.
I was always brushed off cause I have a degree and a good job, but I was psychotic. I knew things were off and there was something severely wrong with me but one second I believed in Mental health and the next second the delusions took over and meds were a sham perpetrated by "the man"
Cool fact. I actually predicted my hospitalization here on Reddit. I made a post asking when I should go and sure enough later within the week I was hospitalized for my first time ever.
I'm not sure what the first time was, but there are certainly some things that stand out in my mind.
When I was 12-ish, I was terrified of the spiders in my room. My mom thought it was because I was afraid of spiders, but individually, I didn't mind them. However, I strongly believed that the spiders on my ceiling and walls coordinated to do me harm. I pretended to be sick in bed one day because there was a spider directly over my door frame, and one beside my light switch, and I could smell an ambush.
Another time, I was in the shower, and something told me that I was dead, very convincingly. I checked the mirror immediately, because TV has conditioned me to think that dead people don't have reflections, I guess. So I finished up in the shower, and got out, and went out into the living room where my family was. Of course, I wasn't dead, but they didn't really acknowledge me when I walked in the room, so I just kind of accepted that I was dead. I went to bed, and for the whole night I thought that I had died, until morning came around.
Those two anecdotes are kind-of lite-mode, I think. The one thing that has really always been present, is music. I hear music almost 24/7. I didn't even realize it was a weird thing, until I started questioning why other people wore headphones.
Finally, when I was around 17, I really started to get paranoid. Like, ludicrously paranoid. I had a small apartment on the second floor of a building, and I kept the blinds and windows closed 100% of the time. I expected, at any moment, for a grenade to be chucked in. I hated leaving my apartment, because there were so many people. I devised strategies for passing them when meeting on a sidewalk. I checked windows and rooftops for snipers. One time, there were too many people on a bus I was supposed to take, so I ended up walking about 40km instead. At one point, I think I really started to break from reality, actually... because I vividly remember trying to work out where the stones on the path in front of me stopped, and the air began, and not really figuring it out.
Shortly thereafter, I completely broke down and went about rebuilding myself.
I spent 30 minutes hovering over my sleeping boyfriend with a pillow. He was a heavy sleeper. I could have killed him. I almost did. I woke him up, sent him home (much to his confusion), spent 10 minutes on hold with my psychiatrists' nurse (I was already being treated for depression), booked an appointment, hauled ass to the clinic, waited 3 hours to be seen, told him everything, got a script, went straight to pharmacy, got my pills, and took them immediately. I've done my absolute best to try and stay medicated properly ever since. Of course I grew up knowing my mother had mental illness, so I was a-typically very educated about the whole thing. Otherwise, he'd likely been dead since 2008.
This was not after a fight. I just was aware things were coming to an end. The relationship was not meant to be. In the heat of the moment, I had the idea that if I killed him he would die my boyfriend. It's not logical. I've always struggled with homicidal thoughts, but this was the first and so far only time I almost committed homicide. By and large I struggle more with suicidal thoughts, but because my schizophrenia often causes me to become catatonic, I've mostly avoided attempts on my life (i.e. my brain performs petrificas totalis when I think of killing myself).
The aliens I was able to see in patterns of furniture, flooring, walls directed me to decipher a code. So I wrote up a notebook of total nonsense and then tried to decipher it. At the back of my mind during this, I was able to see logically that it didn't make sense, but I still had psychosis.
I've had Voices All My Life. And at times in my life have been absolutely terrifying. I wake up many many many times in my life thinking that events have happened when they haven't at all and 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 and 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 time that I realized that these were originals and I just started catching them. Remember waking up one time thinking that I had nervously pulled out all the hair of half of one of my eyebrows and I walked around for a week waiting for the hair to grow back and being just self-conscious about it.. Then only realize that at the end of the week when I took a look in the mirror I hadn't pulled any out and I must have dreamt it and thought it was real.
Always Had This Feeling That There Was Something Off
I'm schizotypal. When I was 12, I stopped going to school. I can't really pinpoint what exactly made me stop going other than perhaps an instinct that something wasn't right. I felt uncomfortable all the time, it felt like too much effort to keep up with the social things of school (even though nothing out of the ordinary had happened) and I didn't want to be part of it anymore and became depressed. I think the great discomfort and this really deep feeling of not being like everyone else were the first signs. I was a totally normal kid but I just always had this feeling that there was something off about who I was. I remember having paranoid thoughts that I was actually two years older than my parents told me I was, sometimes other people seemed cartoonish and one-dimensional to me, even sometimes questioned if other people were real, and I was genuinely convinced that nobody actually liked me (I had plenty of friends). Sometimes my tongue would feel huge in my mouth, or I would feel like my feet were miles apart even though I could clearly see they were right next to each other. But of course as a kid I didn't know that any of these things were abnormal and you don't really tell people either, so it wasn't until I stopped going to school that my parents had any idea that something was wrong.
I went through psychoeducation (not sure if that's the english term though) in the psychiatry a few years back and it was really helpful for me to learn about the typical early signs of psychosis, so I know what to pay attention to and when to slow down.
Time was passing strangely and my memories are fuzzy about the worst of it. I remember realizing I couldn't function at work. I asked my boss if I could leave and walked home ( I didn't live far). I called either my boyfriend at the time or my mom on the way and said something was wrong and I needed help.
I had been prescribed some anti-anxiety medication shortly before that but it put me into a downward spiral. I was trying to save the world. I wanted to solve major problems like world hunger. Problems I had no business trying to figure out.
Something had happened with my vision. I have NEVER experienced this before and it was so bizarre. I don't know if it had anything to do with schizophrenia or if it was a side effect of the medication but lights...just regular lights in an office or the sun outside...they were so BRIGHT. I remember when I finally went into a treatment center to speak with someone I had to squint everywhere I went. It was painful. Also I remember being asked why I couldn't look at the person who was giving me a questionnaire (it was so bright) so I'm pretty sure that I really did go through that.
No one ever explained to me why I went through this. If anyone knows anything about this or has experienced something similar, I'm all ears.
Anyway...the main parts. Feeling watched. And for some reason I "knew" where the cameras were. In vents, cracks in walls, old punctures from thumb tacs. Radio, movies and television was tough. I remember being in my car and hearing a voice coming out of my radio talking TO me. Some voice explaining that they were just checking up on me and that they'd be back later. It was hard to watch TV and enjoy my shows.
I did get hospitalized when this happened. On the way when I was in the ambulance I thought that I was on my way to become part of a team that was going to save the world. Obama was leading it and picked me. :/ Yeah i know...
What else... I didn't think my mother was really my mother. She was chosen to take care of me. And my father (parents had seperated when I was very young) had really only left because he was testing my character and once I was proven a "good person" he would come back into my life with plenty of money I could live off of. That delusion is pretty embarrassing.
I'm glad there was at least some part of me that said "help" while it was all happening and I was able to get some medication to help. It's the most frightening thing I've ever been through and I feel fortunate that I've been able to gain stability and work and be happy since all that.
Im not your typical case i was 30 years old when i started to hear voices. I was getting ready for a camping trip with the family when i herd someone say "You are doing it wrong". I was in my garage by myself getting my boat ready, it made my blood run cold. I looked everywhere thinking someone was playing a trick on me but found nobody.
The next 4 months where a living hell at my house. I started seeing people in my house at work 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 didnt.
I finally told my wife when the voices started telling me to kill my wife and daughter. She was very supportive even went to the doctor appointments with me. After a brief stay in the hospital they got my meds worked out and the voices and people stopped manifesting. From time to time I will hear something or see something and i know its not real i just ignore them and move on with what ever im doing
I noticed something wasn't right probably around 19 years old. Because schizophrenia makes you think your hallucinations are normal, the first time I heard a random voice talking to me I didn't realize it shouldn't be happening or that it wasn't real, I thought there was really a woman talking to me despite the fact there wasn't anyone there, eh. Anyway I still am not sure how much of my major depression and serious unhappiness was due to the abusive relationship I was in, and how much of it was from the schizophrenia but around 19 years old everything hit the fan. I couldn't put up with everything that was happening. I had this disconnected from reality feeling happening and was starting to act strangely like sending cryptic messages to my ex's friends. I was slowly starting to go downhill. There were signs that I didn't realize, like people were telling me I was blacking out and doing strange things like staring out windows for an hour just standing there while a group of people outside look at me like what is she doing...or putting cigarettes out on my bare foot...didn't realize it was happening AT ALL...like when I black out my mind creates an alternate reality that seems totally normal...like when I put the cigarette out on my foot I was thinking about it but I didn't realize I was doing it, I thought I was just walking down the sidewalk. Little stuff like this just kept building and building until I felt I was losing my mind and I had to go see a doctor. He diagnosed me depression and mild psychosis, that diagnosis has changed to schizoaffective with depression which is basically schizophrenia combined with a mood disorder. It really stinks to this type of sick...even medicated I'm not fully normal.
Started With Depression
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 to 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, saying what I 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.
First time I heard voices was in my apartment and it was always whispers of neighbors I heard. At first I wasn't able to understand them. Then I thought I did. They sounded real, because by the loudness of their voices, they could 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 can in fact 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 siciophobic, but am completely nuts.
It starts making me even more depressed thinking about, that I have no chance of ever escaping that disease and having to deal with it the rest of my life.
I'm diagnosed schizoaffective. It started with a bipolar diagnosis when I was a teenager, so I knew I wasn't all there to begin with. I went off my meds for a few years and had pretty mild symptoms. I was going to school and doing well.
In my junior year of college I started getting paranoia pretty badly. It started off mild enough, I think I've always been a little paranoid. It got progressively worse over the course of a couple months and got to the point where I constantly thought I was being followed or on the verge of being physically attacked.
Then I started seeing things. Just little things at first. Bugs crawling on the wall or flying around in the corner of my eye. I would think I saw people and then I'd focus on them and there would be nothing there. Mostly standing on sidewalks while I was driving, which was fun.
It crept up on me to where I didn't think a whole lot about it at first. Maybe a little "that's odd" or thinking something was unusual. Then I kinda took a step back and realized, "Hey. That's not right. I'm freaked out all the time and constantly feel like I'm being hunted down. Maybe I should go back to the doctor."
And now I've been medicated for a couple years. It keeps creeping back up little by little and we just kinda throw more meds at it. I'm pretty functional and as far as I know only a select few know about it
I've been diagnosed as Schizoaffective (Bi-Polar type). Basically means that symptoms of the two disorder present themselves.
Something wasn't quite right when my memory started to decline. Then my cognition got worse, if that makes sense. 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 stupid ideas like their thoughts 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. Shadow people lunging at me, following me...Bugs on my skin. Took a certain episode until I did.
Meds were tremendous help, and now in my life, I am doing very well.
I'm on medication for schizoaffective disorder and it's helped tremendously. However.
Before I was diagnosed I spent most 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.
My mom has this 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 day in her car and get lost. She a!so doesn't believe my dad is her husband. I have a recording of her talking about it and it's chilling.
It's a really unfortunate and life stealing disease. I could go on for years talking about the different things she has seen and people she talks to.
Just know for anyone reading this 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. Don't get mad at them; try and help them. Thanks.
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 when 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 asked me who I am speaking to, concerned. 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 crazy. 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. Psychologically dealing with schizophrenia is mind boggling.
Monster Under the Bed
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". I was 8 or 9 years old.
I had an early onset of symptoms, at the age of 12. I was stressed out for different reasons and lived with only my mum, 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 mum 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 have 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.
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.
The voices are not internal. They're an audible voice.
The voices are not my own voice or the voice of anyone I know. They're unique.
Not all the voices are bad. Now that I'm in a place where the bad ones don't affect me as much there are some nice ones, too.
The voices don't have a set volume. I don't hear voices as often now and when I do it tends to be muffled, like when you butt dial someone and they're trying to get your attention from your pocket. But they can range anywhere from a whisper to a shout.
I'm in a much better place now.