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PEOPLE IMPACTED BY SCHIZOPHRENIA ARE GETTING CANDID ABOUT THE WAYS THEIR
SYMPTOMS IMPACT THEIR DAILY LIVES, AND IT'S A PERSPECTIVE NOT OFTEN DISCUSSED

Hannah Dobrogosz
Sun, November 17, 2024 at 7:16 PM GMT+8
24 min read

27
Yahoo is using AI to generate takeaways from this article. This means the info
may not always match what's in the article. Reporting mistakes helps us improve
the experience.Generate Key Takeaways

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."

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"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.

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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.


Flavio Coelho / Getty Images

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.

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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."

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—Trent A.


Nemke / Getty Images

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."

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—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."

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—AK A.


Win-initiative / Getty Images

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."

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"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


Ediebloom / Getty Images
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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.

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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.


Mtstock Studio / Getty Images

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.


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