My life has been an uphill battle in many ways. The most primary one was the fight to get my mental health diagnosed properly. I live with Schizoaffective Disorder Bipolar type, PTSD, and Agoraphobia. I'm focusing on the Schizoaffective Disorder for now.
It started when I was a child, most kids had the typical imaginary friends which is what makes it very hard to early diagnose any form of Schizophrenia and SD was not even understood or discovered when I was a child. I spent my nights awake terrorized by things that only I could see. I became withdrawn and moody. I began to have more and more trouble in school and I could not relate to my peers which caused me to become a social outcast as I struggled to keep my own grip on reality from slipping further and further each day.
I personally knew even at a young age that something had to be wrong. I was repeatedly brushed off on my concerns for having an over active imagination and told that my experiences at night were simply dreams even though I was very much awake as I have always struggled to sleep. When I was in the 4th grade the school brought a specialist in and I was observed from the 4th to the 5th grade. At one point I was even sat in a room alone with the professional while they asked me questions and I very clearly recall telling them about my hallucinations and hearing voices.
The diagnosis? ADHD and heavy encouragement for my parents to put me on medication. I refused to be medicated and spent well into my teens being told I was simply ADHD even though my behaviors and symptoms did not match up to my friends with actual ADHD. By the time I was 15 I was generally aware that I was most likely Schizophrenic but was terrified of the implications due to the societal stigmas that surround the heavier mental illnesses that aren't generic anxiety and depression.
When I was 18 I insisted with my therapist that I was not just depressed and anxious. She told me I should exercise and take vitamins. My psychiatrist wanted her to work with me on the possibility of a mood disorder. She ignored it. During this time I was only slipping further and further into a more reclusive state of mind as my own grip on reality faltered. On my worst days I would say if you have ever seen the movie Inception where they go into people's dreams and sometimes risk losing themselves in the dream and upon returning to reality still feel as if the world around them is fake that was my day to day. I couldn't tell if the people around me were real or not. I hated leaving the house and began to isolate myself in my bedroom.
Around 25 I finally had a psychiatrist and therapist team who worked together with me and found a diagnosis and actually believed me when I told them about my dissociation, agoraphobia, and hallucinations. I'm now on a combinations of medications that make it so I can function almost normally in the world about me but I still have my bad days.
Of course I also still struggle with people dismissing my condition and the unfounded fear that someone will lock me away one day simply because I see things that they don't. Or that someone will think because of my condition I will snap and become a serial killer like they often portray people like me in media for shock value. Even with these fears and struggles I refuse now to be silent about my condition and educate people the best I can when I can so that people can understand that people like me who live with Schizoaffective or Schizophrenia aren't some scary monster, we aren't completely unhinged, we can live regular lives, you might even know some of us in you daily life.
ANYWAY BACKSTORY DONE
Ask me whatever you want about what its like with this condition as long as its respectful. I don't mind explaining what its like to go into a dissociative episode or what my hallucinations are like. Fun fact my hallucinations have changed multiple times in my life so of you want to know what they were like when I was around a certain age to current day I can go one about that too.
It started when I was a child, most kids had the typical imaginary friends which is what makes it very hard to early diagnose any form of Schizophrenia and SD was not even understood or discovered when I was a child. I spent my nights awake terrorized by things that only I could see. I became withdrawn and moody. I began to have more and more trouble in school and I could not relate to my peers which caused me to become a social outcast as I struggled to keep my own grip on reality from slipping further and further each day.
I personally knew even at a young age that something had to be wrong. I was repeatedly brushed off on my concerns for having an over active imagination and told that my experiences at night were simply dreams even though I was very much awake as I have always struggled to sleep. When I was in the 4th grade the school brought a specialist in and I was observed from the 4th to the 5th grade. At one point I was even sat in a room alone with the professional while they asked me questions and I very clearly recall telling them about my hallucinations and hearing voices.
The diagnosis? ADHD and heavy encouragement for my parents to put me on medication. I refused to be medicated and spent well into my teens being told I was simply ADHD even though my behaviors and symptoms did not match up to my friends with actual ADHD. By the time I was 15 I was generally aware that I was most likely Schizophrenic but was terrified of the implications due to the societal stigmas that surround the heavier mental illnesses that aren't generic anxiety and depression.
When I was 18 I insisted with my therapist that I was not just depressed and anxious. She told me I should exercise and take vitamins. My psychiatrist wanted her to work with me on the possibility of a mood disorder. She ignored it. During this time I was only slipping further and further into a more reclusive state of mind as my own grip on reality faltered. On my worst days I would say if you have ever seen the movie Inception where they go into people's dreams and sometimes risk losing themselves in the dream and upon returning to reality still feel as if the world around them is fake that was my day to day. I couldn't tell if the people around me were real or not. I hated leaving the house and began to isolate myself in my bedroom.
Around 25 I finally had a psychiatrist and therapist team who worked together with me and found a diagnosis and actually believed me when I told them about my dissociation, agoraphobia, and hallucinations. I'm now on a combinations of medications that make it so I can function almost normally in the world about me but I still have my bad days.
Of course I also still struggle with people dismissing my condition and the unfounded fear that someone will lock me away one day simply because I see things that they don't. Or that someone will think because of my condition I will snap and become a serial killer like they often portray people like me in media for shock value. Even with these fears and struggles I refuse now to be silent about my condition and educate people the best I can when I can so that people can understand that people like me who live with Schizoaffective or Schizophrenia aren't some scary monster, we aren't completely unhinged, we can live regular lives, you might even know some of us in you daily life.
ANYWAY BACKSTORY DONE
Ask me whatever you want about what its like with this condition as long as its respectful. I don't mind explaining what its like to go into a dissociative episode or what my hallucinations are like. Fun fact my hallucinations have changed multiple times in my life so of you want to know what they were like when I was around a certain age to current day I can go one about that too.
What is the most frustrating way the media portrays schizophrenia? (And it's always schizophrenia, of course, never schizoaffective disorder, so that's one frustration. I didn't even know it was a thing at all until my brother got his diagnosis.) Like, are there particular turns of phrase or recurring themes used that make you roll your eyes every time you hear them?
Heimdall wrote:
What is the most frustrating way the media portrays schizophrenia? (And it's always schizophrenia, of course, never schizoaffective disorder, so that's one frustration. I didn't even know it was a thing at all until my brother got his diagnosis.) Like, are there particular turns of phrase or recurring themes used that make you roll your eyes every time you hear them?
People always do the AND THEN THEY SNAPPED AND STARTED KILLING PEOPLE! Or the "the voices in my head just haven't told me to kill you yet" haha so edgy. That gets so annoying I swear to God.
It sounds like you had a negative experience with your mental health care worker -- what is something you would want future workers to know? What has been helpful to you? As someone who works in the mental health field, if I come across someone with this diagnosis, how could I be an ally to them / support them (what worked for you)?
Ok as another Schizoaffective person, however with Depressive-type, how often do you get Mania to make it Bipolar type? Because I've been hit by Mania hard in the last two months or so and I have no clue if it's just 'A Bad Time' or if I need to talk to my Psych about maybe reacessing things.
Also: PTSD and Agoraphobia here too. It sucks :C
Also: PTSD and Agoraphobia here too. It sucks :C
Cass wrote:
It sounds like you had a negative experience with your mental health care worker -- what is something you would want future workers to know? What has been helpful to you? As someone who works in the mental health field, if I come across someone with this diagnosis, how could I be an ally to them / support them (what worked for you)?
The biggest help was just the fact my doctor actually listened to me and so did my therapist. So many people want to write it off as a person self diagnosing but honestly self diagnosis can sometimes be the best way to figure out what is going on with a person. So I'd say listen to your patient don't be dismissive. Oh and make sure they feel safe like they can open up about these things. I know I'm not the only person who has those paranoid fears that for some reason because of what I have I'll be locked up for no reason other than the fact I'm "cr*zy"
Gray wrote:
Ok as another Schizoaffective person, however with Depressive-type, how often do you get Mania to make it Bipolar type? Because I've been hit by Mania hard in the last two months or so and I have no clue if it's just 'A Bad Time' or if I need to talk to my Psych about maybe reacessing things.
Also: PTSD and Agoraphobia here too. It sucks :C
Also: PTSD and Agoraphobia here too. It sucks :C
So when I'm. Not ob my medication I'm constantly swinging in my moods. Or I get VERY ramped up out of nowhere and I just need to do something. My brains normal reaction is to look for risk taking behaviors like wanting to get into a fight or drinking hard.
You are on: Forums » Smalltalk » AMA: Living with Schizoaffective Disorder
Moderators: Keke, Cass, Claine, Sanne, Ilmarinen, Darth_Angelus