Forums » Smalltalk » AMA: I Am Schizophrenic/Psychotic

Hello! I'm Sam. For this AMA, I've decided to open up and educate others about an important topic, I think; mental health and, specifically, psychotic disorders.

About four years ago, I was finally diagnosed as being on the schizophrenia spectrum, which means I suffer from a psychotic disorder in that family. To be exact, schizoaffective disorder bipolar type. Though I've had it since I was 12, having it develop after a very traumatic period of time, schizophrenia spectrum disorders are very difficult to diagnose. I had to be monitored for it and suspicions arose when I was 14, but they weren't addressed much due to the social stigma around it. Luckily, I've built up a support system and now I have an official diagnosis, as well as a medication that I'm on that helps. (I won't go into specific detail about my medication for privacy purposes, but I'm willing to discuss how I've taken my medication, ie; injections and orally, which I've both done.)

Schizoaffective disorder is essentially psychosis that develops under specific circumstances and presents as comorbid (meaning: being present alongside) to other conditions. For example, a person with schizoaffective disorder depressive type with have depression with symptoms of psychosis. My type means I exhibit both hypomanic (meaning: less severe mania) and depressive states with symptoms of psychosis. It's not Schizophrenia 2: Electric Boogaloo, if that makes sense.

So why is it not considered schizophrenia by itself, but is still considered a schizophrenia spectrum disorder, you may wonder? Well, the 'affective' part means it happens in comorbidity, usually with a depressive (or manic!) episode. The psychosis is as constant as the depression or bipolar disorder, so not as frequent as schizophrenia. However, since it is still psychosis that displays the same symptoms as schizophrenia, it counts as being on that spectrum.

- I suffer from auditory hallucinations. I hear about three voices at any given time; a tenor, a mezzo, and a baritone. The tenor and the baritone are the most active, especially the tenor.

- I've also suffered from visual hallucinations. These range from seeing shadowy figures to actual monstrous "angels" to insects to even a floating hand once. The last one appeared after I hadn't had a visual hallucination in a very long time.

- I have had a grandiose delusion (where someone believes they are most extraordinary than they actually are, ie; the embodiment of Jesus Christ or a celebrity) in the past that I was a famous TV star for about five years.

I'm on medication at the moment that controls my symptoms fairly well, so much so that I've even started a new job a couple months ago! However, my panic disorder still causes a lot of problems for me, but without most of my hallucinations, it's gotten a lot easier.

But yeah! I'm happy to educate people about anything that they're curious (or concerns them) about psychosis. Really, don't be shy. Ask me anything! (That still follows forum rules, hehe!)

BONUS NOTE: We prefer the term "schizophrenic person" or "person with schizophrenia", not "a schizophrenic"! Plus, "schizo" and "psycho" are seen as derogatory. Some schizophrenic/psychotic people (like me) view it even on par with "r*tard" for intellectually disabled people.

Thank you for reading!

Thanks for sharing. This was interesting to read.

Do the voices you hear say anything coherent, or are they just the sense that you've heard a voice? Do they speak to you, each other, or nothing at all? I've experience auditory hallucinations only during sleep paralysis, after waking from night terrors, so I'm curious about how people with proper psychosis diagnoses experience such.

When you hallucinate, does it affect your blood pressure or vital signs at all, beyond the expected psychological impact? I've heard from a friend their blood pressure goes wild with visual hallucinations, so that's why I'm curious.

How do you feel after a bout of mania?

Does music help depressive psychosis, or worsen? No impact at all?

There's just this ... pattern, I guess, I've noticed in theater friends who later in life presented with psychosis (one depressive, the other OCD related, and another paranoid schizophrenia as began to show in teenhood) and they were all, every last one, theater musicians (band, choir, musicals), with an ease of understanding for subjects like math and molecular science, anything pattern-detection-heavy like composing or computer coding.

it's been a mixed bag of responses re: music as benefit. i know OCD friend can get 'stuck' in musical patterns and depressive psychosis friend has to watch what kind of music they listen to, for content / emotive reasons, so I'd like to hear your experience with music and how / if you enjoy it or if there are types you have to avoid.

One of my children (who are not yet a teenager) was recently diagnosed with psychosis. So much of what you said describes. The 'angels' she sees are actually biblically accurate angels. She sees the shadow figures and hears things too. We are on month 2 or 3 now and it's been rough. Two weeks after diagnosis she was hospitalized. If you have any advice on how to help her cope I'd be very appreciative! I've looked in groups and they were not as helpful (or nice) as they claimed to be.

Please forgive me, I have nitpicky-ish questions.

I've heard a difference in terms; using your example with depression, "a person with schizoaffective disorder depressive type with have depression with symptoms of psychosis," I've also heard a professional talk about "psychotic depression" as its own thing. Do you know if there is a difference there? What was described for the "psychotic depression" thing actually sounded like it could be milder, as the "psychotic" symptoms that were mentioned included things that I'd always though were common symptoms of regular depression.

I suppose the question expands into something like... what is your understanding (or if you know where to pull a solid, official definition from, something that communicated it clearly, awesome!) of what gets counted as "psychotic?" I know sort of the basic concept, but I can never make much sense of where anyone is attempting to draw the line. Things like hallucinations mostly seem easy enough to draw a line on, but delusion, for example, seems to have some very grey areas.

1) When I'm not feeling particularly stressed - nor do they seem particularly aggressive - they usually just babble over one another. One time, I was in the car and they wouldn't shut up about what the price of coffee must be like in Brazil. It was more annoying than anything in the moment, but I guess it was a brief moment that I was glad it wasn't threatening. Their voices are ironically (or perhaps fittingly) the clearest when they give threats or tell me that something bad will happen.

When they speak, it does feel like I'm actively hearing something, rather than just a feeling. It can be pretty hard to get grounded in that moment.

2) Hmm, to be honest, I've never considered that, nor been tested for it. I mean, my heart rate increases, so I imagine my blood pressure would rise! I hyperventilate when I hallucinate as well, that I'm aware of.

3) Normally, I sink into a depressive state after a manic episode. I feel really high and excellent, but unfortunately, it also makes me buy way too many things, since I guess I'm addicted to that rush of the "shiny new thing" feel. I don't gamble or drink, but I definitely take financial risks when I'm manic. I usually feel really guilty afterwards and then I just plummet, so that's what I and my support group need to watch out for after a manic episode.

Oh, it definitely helps me, but it would also depend on my mood. Sometimes it's hard to focus when the voices get really loud. Sometimes when they make me angry or sad, I listen to angry or sad music. Not the best, because then I get angrier or sadder, but it's sort of like an emotional catharsis; I feel better afterwards!

Sometimes I'll listen to songs and feel paranoid, even if it's a happy song, and will be looking over my shoulder a lot.

But honestly, I feel like it can be a good source of help for escaping an unfortunate fantasy you essentially get stuck in. Especially if your hallucinations influence your mood or vice versa.

I really, really wish I could take your hands and look at you to comfort you, because I want to say, I know this is equally as scary for loved ones as it is for the sufferer.

I'm no professional, but the best thing I can offer for someone who's been in that position and has been hospitalized against their will before; never tell her it isn't real. This sounds detrimental at first, but it really just exacerbates the problem. What you should let her know is that you'll let nothing hurt her, because for her, these things are extremely real. It is far more comforting to have someone believe us and offer their support and most of all, protection, as opposed to just telling us to calm down.

One thing I've found online that was a bit helpful for me is offering to take photos of where her visual hallucinations appear. I'll explain; hallucinations don't appear in digital media, just the physical area the person occupies. If you can take a photo of that area and show it to her to demonstrate that nothing's actually there (and most of all, assuring her that she's safe), perhaps it can offer her some comfort?

I'm wishing you guys the best of care and hoping you can find a medication that works for her soon. It know it can be hard for someone to keep up with their medication and even harder to find the right one. But there's a light at the end of the tunnel, I know it!

I'll preface this with saying that I'm not a professional myself, just someone with the condition, so this is my understanding so far.

1) Psychotic depression is absolutely a thing! The way schizoaffective disorder depressive type differs from it is that it features both traits of schizophrenia itself (hallucinations, grandiose delusions, ie; those of which are not considered common in depression). These are segmental; these are situational and happens in phases, so it is not schizophrenia and depression, but rather they happen at the exact same time during the exact same phases. A schizophrenic person can be depressed sometimes, or be depressed without schizophrenic symptoms sometimes, but a schizoaffective person has comorbid conditions.

It sounds odd, but I also am diagnosed with Major Depressive Disorder. That has periods of remission, meaning it subsides on its own and does not exist alongside my schizoaffective disorder.

2) Well, the DSM-V defines psychosis as;

"defined by abnormalities in one or more of the following five domains: delusions, hallucinations, disorganized thinking (speech), grossly disorganized or abnormal motor behavior (including catatonia), and negative symptoms"

"Negative symptoms" seems to be extremely varied and depends on the individual.

Basically, there's no "right" way psychosis looks like. It appears different in different people. Picking out what those abnormalities are is part of what makes schizophrenic disorder extremely difficult to diagnose. As I've heard someone say once, "No doctor flips their glasses onto the table and goes, 'Yep, it's schizophrenia.'"

Maybe this article will help clear some things up for you? It was pretty helpful to me!

Hope that helped!

Is there any way people online can be supportive and helpful during a serious episode?

From experience, both personal and in knowing other psychotic people, just keeping the person talking (this can be in text or in real life as well!) really helps. A lot of us tend to isolate when we're having an episode - and that's keeping in mind, episodes can last for days at a time. Try to keep in touch, even (or especially) to distract us until it passes. If you can't be there immediately, I wouldn't want anyone to feel pressured to be someone's mental health crutch, but it helps to have someone we know we can rant to, even if it's about God sending angels to murder us or the CIA putting cameras in our cabinets.

Basically having someone who understands us, who can go "that's really scary, I completely understand" is really meaningful and even essential to our mental health. We all want someone who supports us and believes us, even if you have no mental health issues, so offering that to someone during a psychotic episode is really important, I think. Preventing it in the first place is important as well; during an episode or even without one, try to see if the person is good on taking their medicine. Obviously, it's the Internet, so we can lie, but even just a gentle nudge sometimes can make a world of a difference, knowing that the ones we love are worried about us.

Trigger warning for self-harm in the spoilered paragraphs!

If they have self-destructive urges (which I know a lot of psychotic people do) and want to self-harm (or even feel scared enough to want to harm others), I find this website pretty helpful if I want to cut myself. It tides me over until the self-directed aggression passes. But of course, if you're afraid they're actually going to hurt themselves or others, contact emergency services in their area!

I'll reiterate at the end of that that psychotic people are not inherently dangerous and most are not violent at all; if they are, it's directed at themselves.

I also REALLY wanted to link this one website where there's a little flower sitting alone in the dark and it talks to you about your negative feelings and then at the end, you say something kind and positive you would say towards your best friend. Then the sun rises and the flower gradually blooms and it shows all the kind words other people entered into the website in the sky.

But I CANNOT remember the name of it for the life of me, I just know I found it in a tumblr master-post for self-care. If someone finds it, I owe you my life, haha. That website has helped me through some dark times.

But basically, keep our mind away from the negative, with a voice or video call or even with little distraction websites. Tell us you'll keep us safe. Most importantly, make sure we aren't alone. That's the scariest thing you can be during a psychotic episode. Because if we know that you believe us, we'll more readily believe that you'll also protect us.

I'd also like yo reiterate, this is not a stand-in for actual professional help that would likely be required during a psychotic episode that's severe. But these are just solutions I can think of for someone who is separated far away from their psychotic loved one and what has helped me in the past. Preventing isolation really is the best you can do.

So a follow up question: My instinct would be to tell someone "Don't worry, God isn't sending angels to kill you. You're safe." But are you saying it would be better to say "I believe there are angels in your house, that's really scary!"?

hi friend!! i have a question!

does it ever affect your sleep? specifically, your dreams? in what way?

Oh, no, it's more like "I believe what you're going through" and affirming that as opposed to outright saying it's real. Basically, you're agreeing with them that it's scary without actually confirming or disregarding what they're saying. When they become settled down, they might still believe it's there, but you have a better chance of confirming to them that they're in no real danger.

An easier way of putting it is, as opposed to saying "it's not real", go "they're not going to/can't hurt you" or "I won't let them hurt you". It's more comforting and less isolating than saying something that sounds like the fear is just made up.

You're not saying it's real OR that it's fake. Just acknowledging a fear, which is what you should focus on; the fear instead of the hallucination. Like, "I know what you're going through is very scary for you right now. I'm here to help you through this. You are safe and they can't hurt you."

I hope that makes sense!

Hi, fig!!

It certainly does. I've developed chronic insomnia because of my experiences, especially with the anxiety that it's developed. Some days, I end up running on two or three hours of sleep at best. During some manic episodes, I would be awake for over 24 hours. I'm hoping the new therapy I've been trying lately - transcranial magnetic stimulation (TMS), where a magnet is put to the head and pulses are sent to stimulate the brain to make 'happy' hormones - will help with that. Listening to ASMR and audio therapy videos are also a huge help when I can't sleep or I'm having a panic attack. There are many videos designed specifically to get through that!

The ironic thing is that I've maybe dreamed of the angels only once but otherwise, I've never dreamed of my hallucinations. I don't even remember if I've heard the voices there, but not any that I recall. . . it's odd how the brain works that way. My nightmares tend to be very vivid (possibly because of my disorder), but I've managed to teach myself how to wake up from them so that they bother me less.

What an interesting topic. I wonder if when saying "I believe you," it would possible to say something like, "I believe this is real for you, and it must be scary," without saying something like, "I believe this is what's actually happening, and it must be scary." In fact, the example about taking pictures of the empty space where the hallucination is taking place to show that the hallucination isn't in the picture seems sort of like that. Not dismissive, like it would be to say, "Its not real so just calm down," but still presenting some sort of evidence that they're safe...

What do you think of that approach?

I quite often, with my mom, tell her, "No, xy or z is not true. That person is on another city," for example. She seems irritated when I do that and she reminds me: "Don't dispute my word." So lately I've started saying, I don't believe this or that is happening but I won't dispute your word, so...can we work on this or that (distraction)?"

Questions:

1. How much has medication decreased the auditory and visual hallucinations? For example, 20% less, 50% less, or more like 90% less?

2. Which different effects did the different forms of medicine have (for example, are injections easier to stay compliant with because they happen less frequently that having to take a pill?)

3. Does people talking about delusions or hallucinations trigger them?

4. So the voices react to what the other voices are saying? Do they react to what you say (or think "at" them). Are they quieter when, say, you're having a conversation with somebody else or reading a book vs when you have down time/idle time? Does saying out loud or writing positive affirmations help?

5. Does the amount of sleep you get impact the amount of hallucinations or the quality of them?

And a comment:

That flower thing sounds so amazing--that website.

You are very articulate when talking about these things. I'm glad you found medication that helps you. Take care.

Thank you so much! I never thought to take pictures! I hope that helps. She stays glued to my side and sleeps in my bed during these episodes. The strain It's putting on me is draining me. I can't take care of her if I'm not physically/mentally well.

I have one more question though. One of her triggers is loud noises. When there are too many people/too much chattering, it stresses her out and then the voices come out and say bad things. Do you think noise canceling headphones would help? I'm worried it might drown out everything else and make her focus on the focuses rather than keeping her calm enough to not hear them. What are your thoughts? She is 10 and has already tried to hurt a lot of people because of them. She's been kicked out of school because of this.

Yes! This is actually exactly what I was talking about; not sounding like you don't believe them, but also not telling them it's real.

I'm grateful I've gotten to a point in my life where I'm able to distinguish that what I'm experiencing isn't real, but this is after a combination of suffering from it for a long time without that realization and eventually having the right medicine.

I've also seen like six different therapists so. ¯\_(ツ)_/¯ No exaggeration! Many of them weren't very good at empathizing with me. One even said my symptoms were out of their ability to handle, believe it or not. Luckily, I have one I've been seeing for years now and she's very helpful and understanding. I feel like I can tell her anything and I won't be judged or interrogated about it, especially when I told her about the angels.

1) Most medications I've taken got rid of the visual hallucinations, but not the auditory ones. Luckily, I'm on a medication now that takes away about 80% of the symptoms. I say that because I still experience the mood cycles, as well as some hallucinations slipping through, even when I'm not stressed.

That's where I saw the floating hand! I had a panic attack afterwards, but I used coping skills my therapist taught me to get through it. Essentially grounding and using a guided meditation to help me through it.

2) I started taking the injections because the oral medication was already so expensive and it was easier to keep up with shots than pills. So, I had less of a risk of relapsing if I missed a dose or became too depressed to keep up with them.

Trigger warning for injection and needle description below!

I imagine the injections would be even harder to take if you didn't consent to it, since the injections themselves were pretty painful. I remember my first time getting one and I actually yelped because the medicine stung really bad! It also leaves a little lump in your arm, where it remains for a while as the medicine gradually gets absorbed into the body. It's a very thick substance!

Ironically, using larger needles and going deeper made it less painful. It's injected into the deltoid muscle of your upper arm, or at least the one I was taking was. Some people get it injected into the hip/buttock and there are different sites depending on the antipsychotic. Usually it's in the arm though.

The injection, I don't recall having side effects for, outside of a sore and tender spot on the arm. Twice, it gave me a fever, but it was very mild. What was more severe was the drowsiness from it!

I went back to the oral medication since the injection prices skyrocketed with COVID-19. I'm on a medication that has both an injected version and an oral version, under different brand names. Both work equally well for me!

I'd have to say the worst side effect that both had - which I deal with every day - is the nausea. I go into work retching some days and I get car sick very easily, so I can't drive and have to rely on carpooling. Just last Christmas, I had to spend it with my family with a sick pot at my side since some side effect days are so bad.

3) Not really? Talking about hallucinations or delusions, or when either come up in roleplay can stress me out, hence I talk very extensively with my RP partner if psychosis will be a theme. But no, they don't trigger them to occur.

4) Sometimes they talk amongst each other, but not always! Most of the time, they just ramble or even talk over each other. My voices do not react to me either. They also don't quiet when I'm talking to someone, unfortunately, but it can help me try to ignore them. Ignoring them is a skill that's very hard to do, so I struggle with it a lot. Positive affirmations do help me though, I believe. I don't say them out loud, but listening to a video of someone saying them can drown out the negative things the voices are saying.

5) Oh, definitely! They're much worse when I'm running on say, only two hours of sleep, compared to when I've had six to eight hours. Probably because sleep deprivation makes your brain run wild anyway. I've heard of cases of people going days without sleep and they start to hallucinate, even without psychosis.

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Thank you so much for your questions!

Let me say that while I may not completely understand your situation since I am not you, I do understand how taxing it is, especially since I've tried to help other psychotic people in support groups before. Trying to reach out to folks dealing with such a thing can be a great mental strain and many healthcare professionals even go through something called 'compassion fatigue'.

It's a very scary time for you and your daughter, and I'm sorry you have to go through that. Just know you're not alone. I'm here for you guys!

Actually, one of my triggers is sudden loud noises myself. I've never used earmuffs for it before. I'll admit that as I think about it, I don't think it'll be the greatest thing to help someone with auditory hallucinations since it can be isolating. However, I do believe this is a situation where they may be beneficial if it's a particular trigger.

There's this shop I've found online just recently that's full of things that I'm excited to try. It's called Therapy Shoppe and it has a HUGE selection of items to help mentally/neurologically disabled kids (adults too!). Maybe you can sit down with your daughter and look for things to help her when she's feeling stressed? Many of the items are to sooth destructive urges as well. And best of all, the prices are really good!

Trigger warning for brief mention of self-harm.

When I feel uncomfortable or my voices are saying very not-PG-13 things, I want to bite myself. This website features on a lot of items to help curb biting urges, like chewy necklaces and bracelets (adorably called "chewelry).

Might I suggest something to help her calm down to be a weighted blanket or vest? I don't know if they'd overwhelm her, but I know for some psychotic people, it can be a great grounding tool for comfort and feeling secure and safe.

It might also to help to find something she can fidget with. They have specific hair-pulling and skin-picking-themed items for those urges to be destructive, especially where it'd concern bodily harm.

A grounding technique I've been taught is focusing on sensations I am actually experiencing. "What are three colors you can see right now?" "What are three items you can see and name?" "What can you smell right now?" "What can you feel right now?" It's good help for people with panic disorders, too. It's helped me through panic attacks before. It might help to focus on a little fidgety thing, too, if/when she has one. Direct her focus to the item that she can experience right now instead of her hallucinations.

It's less "don't acknowledge the hallucinations" and more "acknowledge that they can't hurt her". Not because if she focuses on them that they can; but because they really can't, no matter what. Because it's true, ultimately it's not real. But like I've been saying, saying that doesn't help in the moment.

You want to redirect the attention gently - don't make it urgent or a "pass or fail" sort of thing. Compliance on the psychotic individual's part makes all the difference and you're only going to get that if you see from their point of view. This can be exhausting, I know. Just make sure they have something they can redirect their feelings to until it passes.

Because it will pass, I promise you. Even psychotic episodes, though they can be long, don't last forever! Getting through the moment and being in the "now" is important. You guys are strong enough to do this.

I was and it was very hard for me. I was there when I was a child. I didn't have the right help I needed either, since my family didn't want to acknowledge what I'm going through. But you're doing that for your daughter and that's going to make a world of a difference; now and when she grows up.

I believe in you guys!

Is it different for everyone with Schizophrenia, as in hallucinations? A girl I dated for a while has schizophrenia, and she has had similar experiences. It fascinates me, as in I want to know what a day in your guys' heads must feel like. Sorry if I sound prodding or childish, this is something I am just really curious about.

Also, I imagine it feels like living in a horror movie sometimes. Is this accurate?

Additionally, does finding an "anchor" help? Like something real to kind of anchor yourself?

I have schizophrenic friends.

what are your worst experiences with schizophrenia

Sorry for the late reply! I thought hard on how to go about these answers. I hope they're helpful!

1) Yes, it is! Every schizophrenic person has different kinds of hallucinations or delusions. A little-known fact is that you can actually have schizophrenia without hallucinations as well! They are a factor in defining the illness, but not a requirement.

They are considered a "positive" aspect of schizophrenia, meaning medication oftentimes can treat positive/active symptoms (like my medication does for me for paranoia and hallucinations) but not the negative/passive ones (like my concentration issues).

2) When I dream, sometimes it's my only escape. I don't experience hallucinations in my dreams, as I feel normal for once. But getting out of bed is really hard because of this. Because I've been tossing and turning all night. Because of how exhausted I am. Even now, my medication is a sedative that drags me down a lot in terms of fatigue.

During a psychotic episode, I'd go days without taking my thyroid medication in the morning. I'd also skip breakfast; the voices make me too anxious or disgusted to eat. Then, I'd gorge myself at lunch until I forget to eat dinner.

I always felt like I was being watched, so showering was out of the question. I'd look disheveled as I didn't have the energy to do my hair or even brush my teeth. I'd down distractions like a stiff drink; playing music that was way too loud or trying to write through it. I don't even have a lot of the poems I wrote because I'd just get disgusted with myself and delete them afterwards.

The only thing people would really notice, since I was so secretive and I didn't work, was that I withdrew. I had no interest in doing things, as I just couldn't focus. I didn't talk to people since I thought I was being stalked or that everyone hated me. Violence TW: There were times I was so jealous of my sister gaining more adoration than I had that I threatened her. (NOTE: We're on great terms now and she's part of my support circle. She understands I wasn't myself during that time and that it isn't who I am.)

It was really a trial to not skip medicine, but now that I'm on something that really works for me, I understand how important that is. And that it's very important to let people know when things "slip through" as well.

3) It can during a psychotic episode. Sometimes I just sat there in great, constant fear of when the angels would get me next. I would freeze entirely and sometimes hold my breath since I was afraid they'd hear it and find me (since they have no eyes). It's a really overpowering feeling of dread that's very draining. I've not met a single schizophrenic person who didn't look exhausted, honestly.

4) For some people, like me, it does. I've found my anchor in my pet parrot, Buddy. She's my whole world and she's a great help to me- well, except for when she screams. But I've found animals are a great way to connect with another living being when you feel cut off from other humans. And you know for a fact that animals will defend you, tooth and claw.

I think I've answered some of that above! This is namely in regards to my personal experiences and less with interacting with other psychotic people, which I have both inside and outside of a mental hospital. I hope it still helps!

Thank you for the questions, as always!