# Diagnosed Schizoaffective, Don't Feel Schizo



## Surfer Rosa

My doctor diagnosed me Schizoaffective, without obvious psychosis going on. My therapists didn't suspect anything psychotic, and they see me full-time at my outpatient treatment center. So far my communication with the doctor has been poor, and his reasoning has been somewhat unexplained. However, I have been experiencing very poor mental health for fours years now, and I'm afraid it could be a trend toward the more severe.

Sitting on the fence between having a schizo-disorder and not is crippling, as many of you suffering from DPD, MDD, and GAD could imagine. I'm also currently going to supportive housing, due to my difficulties with employment and total lack of family support. Most of those patients are probably schizophrenic, as it is the most disabled category of mental-health treatment seekers.

I'm reading a lot of stuff about how people with schizophrenia can be very successful, or at least socially functional and occasionally happy. However, I don't want another metaphorical curve-ball thrown at me. I already lost my love, my family, and my education. I don't want to lose my sanity and self-control.


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## pasha

So what are your symptoms that lead you to diagnosed as a schizo I wonder??????


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## yellow_lamp

I think that your doctor is just ignorant, diagnosing someone without psychotic symptoms with schizoaffective.. You shouldn't worry. I've also seen on this forum a guy who said he was diagnosed with schizophrenia but he wasn't really schizo at all and later he wrote it was a mistake. I was told I may be schizo as well. I hate these doctors...


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## Surfer Rosa

I'm gonna attempt to force that out of him, with my therapist's help.


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## something6789

Who cares man. Some Dr. are complete and utter shit. Fuck him!


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## Surfer Rosa

He said I don't fit the whole criteria. It's something to look out for, but not something to expect.

Really a flaw in the system that something so uncertain can pass as a primary diagnosis.


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## something6789

Mental health care is so far from perfect it's almost silly. But, on the bright side it's 1000x better than even 20 years ago.



Surfer Rosa said:


> He said I don't fit the whole criteria. It's something to look out for, but not something to expect.
> 
> Really a flaw in the system that something so uncertain can pass as a primary diagnosis.


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## Guest

I think its a good idea to maybe get another opinion and see someone new. I mean, you live with yourself and psychology can be valuable but makes a lot mistakes, especially in diagnosing people. I mean in all honesty, while watching and getting psychotherapy myself one person might see you one way, another person totally different. I would take any diagnosis you don't agree with, with a grain of salt unless you are completely in denial. If you have a basic framework of your issues and feel it doesn't fit , the chances are, it doesn't. I know nothing of schizoaffective, so really cant comment on that. Be careful not to box yourself into what other people say etc as well. True for this board too. While comments may be extremely helpful to worthless at the end of the day its you who knows whats up and what you think about it.


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## Surfer Rosa

Not the case for all psych doctors, but I think this one is doing his best. My friend's father paid for me to see his psych at a rate of like $600 an hour. The guy said I was 'troubled', but didn't want to diagnose me with any particular disorder. He didn't even want to diagnose panic disorder, despite the panic attacks. He said the attacks were not the disorder - my views and style of living had become disordered. I could see how a partial-hospitalization doc would go and say, "We have to diagnose him with something."

So I'm going into supportive housing--my family kicked me out, was confusing/abusive...-and looking to become more functional. The years ahead will determine if I have a disorder or not. The question is whether or not I'm like this because of my circumstances, or vice/versa. Therapists play around with circumstances a lot more than these docs, and they seem to think a sizable minority of people they treat are in a poor mental state due to self-inflicted and/or externally precipitated "bullshit". Docs accommodate the therapists by calling it PTSD or something like that, but it's really just, "Shit fucked him up," which is not quite the same as PTSD in an organic sense.

I could very well have a mental disease, though. My family is pretty nuts. It's a matter of nature vs nurture with them too, but I could see psychotic disorders, depression, and all sorts of stuff being present in my family. Hopefully that's not the case. I would like to feel 'normal' again, after some serious changes are implemented. When people are diagnosed with a chronic, serious mental illness, the goal is to 'function in spite' of it. I don't believe in quitting on what may be my only shot, so I guess I'll march on.


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## crunchytheclown

I'm not sure schizophrenics are in the worst shape. I have met a few that do pretty well as long as they medicate.

Me, OTOH am completely disabled by my dissociative NOS. I can't take care of myself and I'm going to lose everything -- the rest of my mind included.

Really. I'm thinking I'm destined for permanent institutionalization. I'm not sure how long I can hang on.

I think the next step is decompensation and with that, the end.

It's horrible. No one gets out of those places. You really could be worse -- like me. Hang in there. There are fates far worse that what you're going through. My fate, I think.


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## Guest

@clown hang in there man. You never know. Sorry your feeling this way. Hit me up if you want. But i do know the feeling.


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## Surfer Rosa

@jus7

I was just saying that the idea of a diagnosis can be abstract, and that I'm not qualified to assess myself. I was supporting what you were saying by explaining (maybe in a rambling way) that my second opinion evaluation didn't want to diagnose me with anything.

It's unclear what everyone has, unless they fit the stereotypical mold. Still, I would like to not consider myself schizo. You are right about that.

Dissociation and schizo symptom descriptions combine sometimes. Dissociating is still not the same as paranoid psychosis, but differenriating between schizo and dissociative disorders based on symptomilogy alone might not always be possible.

I'm just going to keep hanging on, and hoping that I don't have schizoaffective. In fact, I'll probably be telling myself that I "must not" have it, simply to stop worrying all the time about it.


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## Surfer Rosa

@crunchytheclown

Please try to remember that even though you can't imagine getting any better, it is still very possible.


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## Zed

Surfer Rosa said:


> My doctor diagnosed me Schizoaffective, without obvious psychosis going on. My therapists didn't suspect anything psychotic, and they see me full-time at my outpatient treatment center. So far my communication with the doctor has been poor, and his reasoning has been somewhat unexplained. However, I have been experiencing very poor mental health for fours years now, and I'm afraid it could be a trend toward the more severe.
> 
> Sitting on the fence between having a schizo-disorder and not is crippling, as many of you suffering from DPD, MDD, and GAD could imagine. I'm also currently going to supportive housing, due to my difficulties with employment and total lack of family support. Most of those patients are probably schizophrenic, as it is the most disabled category of mental-health treatment seekers.
> 
> I'm reading a lot of stuff about how people with schizophrenia can be very successful, or at least socially functional and occasionally happy. However, I don't want another metaphorical curve-ball thrown at me. I already lost my love, my family, and my education. I don't want to lose my sanity and self-control.


Get a second opinion. Doctors are notorious for misdiagnosing mental illnesses particularly dissociative disorders. As an example - it takes an average of 7 years for people with DID to be correctly diagnosed and treated. That's a long time to be mistreated - and all too often miss-appropriately medicated!


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## forestx5

Hi Surfer! My experience lends me to believe that a diagnosis is simply a premise to bill your insurance, and maybe provide you social security and other needed benefits if your symptoms are disabling. Schizo this or that can be the most effective diagnosis towards that end. What is important is finding a treatment regimen which most aptly assists you in living a livable life. You write like a very intelligent human being. My trials and tribulations with mental illness were very difficult to manage, but I do feel like I did the best I could and I had a life so to speak. Here's hoping you do also!


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## Guest

Last year a therapist tried to tell me and the supervising Doctor that I was schizoaffective. I said in nicer words of course get fucked. Most people woth dissociative disorders will be tagged with this label at some point in there lives, but I've met very few that meet the criteria for schizoaffective.

Also, when I worked in supported housing as a mentor (the same kind you're going into I presume) there was a man there diagnosed with schizo affective disorder. He never once had episodes of psychosis. So I'm not sure if that means anything but even so, I think Drs are quick to label it as something easy and more well known about when In reality, it's just DP.

I guess I have to see it from their POV, explaining my symptoms does make me sound crazy


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## Surfer Rosa

@Zed:
I agree. It took me a while to get off the what-if aspect of the tentative diagnosis, but talking to you guys, my roommate, and my therapist helped me lean towards the doctor misjudging.

I'm also trying to think (and a lot of people panicking on this site should too) that feeling unable to deal with something is certainly not the same as being unable. I mean, maybe a schizoaffective diagnosis would not prevent me from doing what I want to in life?

Here's the thing: low to moderate dissociation does not immitate psychosis, and sometimes severe dissociation doesn't eirher! Why would he look at me, detached and complaining about feeling stuck in some dream or illusion, and say I no longer have sight of reality? He even accused me of being paranoid of them, despite me fully participating and so on!

I think he is paranoid, and has limited insight into his and other people's behavior, potentially leading to a loss of contact with reality.

@forestx5

I just came out and said, "I don't fit the criteria for the disorder, and I haven't under your care, therefore I don't have the disorder on paper like it says here on the treatment plan." I said that with like 45% confidence, and he replied, "Aaaa *ahem* (grimace) YOU DON'T."

Maybe he did just put it to get me Social Security Disability, to tell the guy reviewing the case that I have more symptoms than just anxiety and depression.

I don't want to be disabled though. I was just looking to pimp the system for what it was worth, after being denied a federal college loan.

You referred your life in the past tense. Why is that?

@Jeff

Thanks. You're awesome for being a mentor. Dissociative stuff is more common than schizophrenia, so it's odd to see one diagnosed more than the other.

I am in transitional housing. They think I have a real shot at independence still, which is reassuring. It's geared towards raising functioning and moving out when possible. Funny that it's so depressing looking a place on the surface.

Could you tell me more about how people with IQ and no psychotic symptoms end up living in these supportive housing things? Is it overmedication? Lack of desire to change due to severe depression?

Sorry if that sounds ignorant, but I need to know how to get back into the general population. I don't want to be definitively less productive and involved than other people. As an unhappy person, I've always needed a reason to exist, something significant to contribute.

PS: I hear phrases to describe DP like numb, slow motion, dreamlike, feeling no association to your body or thoughts. I would chalk that up to psychosis *if* I didn't know what dissociation was. Nothing about it breaks reality testing.

Even crazy anxious elaborate theories to explain the feelings don't necessarily fail a reality test. "There's no proof for that. There's more proof that you have a mental disorder." "Yeah, you're probably right."


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## forestx5

@Surfer Rosa

I refer to my life in the past tense because I am now retired and living comfortably and I have accomplished many things in life that I never thought possible after the onset of mental illness at age 17. I am still symptomatic with dp and symptoms of major depression, but I no longer "struggle" with it as I once did because, somehow, it no longer really matters. If I die tomorrow, I die happy knowing that I made the best of a very bad situation. I lived most of my life in fear and ignorance of my illness. After the onset of my illness, I no longer recognized myself in the mirror and my hands seemed foreign to me. My eyes filled with floaters and I began to experience frequent ocular migraine headaches. I suffered intense panic attacks and I suffered long bouts of major depression with severe insomnia, and severe anxiety. I once went 52 days without real sleep and lost over 30 lbs (more than 15% of my body weight) during that period. I would lose similar amounts of weight during other episodes of depression. My anxiety levels were so high I found it difficult to eat. I was sick with depression for most of 2014. While visiting my local VA Medical Center in that year, I was TDO'd (temp detention order) by the doctors there and forced into their custody for treatment. I ended up having a battery of ECT and I believe it was a very beneficial experience for me. 2015 was a much better year for me. I say I struggled in fear and ignorance, but late in my life with the help of the internet, I did find some answers to the questions that had plagued me for 35 years. I know what happened to me the 1st time I smoked cannabis, which was the trigger for the onset of my life of mental illness. I just dont know why. After smoking the cannabis, I experienced the very unique sensation of "epigastric aura". 50% of epileptics who require surgery for intractable seizures experience this podromal sign prior to the main seizure. Following the aura, I began to experience mesial temporal lobe seizures. I was in "status epilepticus", or trapped in a loop of seizures which re-occurred at 5 second intervals for several minutes. This experience was horrible. It was like being psychically water boarded. When it was over, I was not the same. I went into a post ictal psychosis which featured derealization and depersonalization. This segued into my 1st major depressive episode which featured severe anxiety and insomnia. I would experience another 4 or 5 such episodes throughout my life, and each was life threatening in intensity and duration. Once I had an explanation for what occurred to me at 17, I sought medical evidence to support my hypothesis. I had an MRI with epilepsy protocol and also two Electroencephalograms. Both my EEGs were abnormal, showing "significant pathology in my left (dominant) temporal lobe. So despite the turn of events in my life at 17, I was able to complete an enlistment in the army with honorable discharge. I was able to graduate at the top of my class from technical school. I am married for 25 years and have a lovely, healthy, intelligent daughter. I was able to maintain gainful employment for 40 years. At 6' tall I knew the thrill of dunking a basketball on a 10' rim lol! And I have quite a few other trophies in my trophy case. Who knows? I never intended to strive for anything special in my life. As a teen, I was happy to get high and do the minimums. Maybe my mental illness served as a catalyst for me to make the effort? But it is mostly in the books at this point. I found this site many years ago. I knew there had to be others with similar experiences. I have known some very dark times with my illness. If you persevere, you can come through, I empathize with you all.


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## Surfer Rosa

Thanks for that, forest. I wish you the best.


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## stuckinside

I just want to say that I have been through something similar. A doctor diagnosed me with "slight" psychosis or rather "might-become" psychosis and put me on antipsychotics. After couple of months I decided to stop taking them and had to leave that doctor who even said to me : You will be not able to live any kind of normal life without these pills.

Here I am, after 2 and a half years, working and studying and living a normal life

I seriously think these kind of doctors can worsen your mental health so much rather than helping you or healing you :/


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## Zed

stuckinside said:


> After couple of months I decided to stop taking them and had to leave that doctor who even said to me : You will be not able to live any kind of normal life without these pills.


OMG..... How the f would he know how things are going to turn out for you? Talk about a control freak!



stuckinside said:


> Here I am, after 2 and a half years, working and studying and living a normal life


And... there's no reason you can't keep expanding on what you're already doing without their 'help'.

Kudos to you for you for turning your back on them and looking after yourself. After all, WE really do know best for US and what works and doesn't work, and when see that and take control of our lives we can begin to make it better.

When I was in the care of the doctors and the system, I couldn't even begin to heal. They did nothing but make me worse - a lot worse. Looking back now it was obvious they didn't have a clue how to help me (or others) even though they said they could. It was only when I walked away from the mental health system that I started moving forward in recovery in leaps and bounds - and I've never looked back.


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## babybowrain

hi schizophrenia is caused by drug use. so stop doing drugs, put on some nice clothes, and get a job. you are not disabled. you are a normal person. someone's trying to get rid of you.


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## frenchguy

hi,

my psy also mention schizoaffective with me, but i don't really care. these are just name. they don't really mean anything especially the term schizophrenia itself is very broad. No matter what i don't think you should identify yourself with any mental disorder, we are all just people in the end everybody function in a different way. Also psychiatrist are often lost regarding dp, and misdiagnose it a lot.


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## Surfer Rosa

Thanks, Lesley and frenchguy.

I agree with both of you. Frenchguy is right that psychosis is not always schizophrenia, and schizophrenia is poorly understood. Frenchguy is also right that dissociation is not supposed to be psychosis, but psychiatrists mistake the two very often.

As for Lesley, what you said about the person you read online, I'm noticing a lot of personality disordered (Axis II) people are diagnosed with disorders like bipolar and schizoaffective (Axis I). This is because the symptom experience can be superficially similar. Even after the distinction is made, the diagnosis stays the same so that insurance companies continue to pay out what they were previously. People with BPD and NPD have a distinctly dramatic, turbulent mental and emotional experience. They deserve help.

I also agree with what you said about not wanting to be depersonalized, and realizing that true fulfillment and self-love are more important than our levels of mental functioning. Not much is more important than our level of mental functioning, but I have to agree with your very moving description of that epiphany. Unfortunately, life can become dangerous for people with severe mental illness, and we have to compromise our happiness very frequently just to survive.

I agree with babybowrain to some extent as well, although we need to cooperate with the powers that be, however unhappy we are with them.


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## frenchguy

yeah schizoaffective is definitely different than schizophrenia more than that schizoid personality disorder are not even psychosis they are neurosis , which means that they are no disconnection with reality so are not schizophrenia, also schizoaffective disorder are quiet treated the same as depersonalization for example lamotrigine is also prescribe for schizoaffective disorder, as it is known to be one of the most effective drugs for depersonalization, where it as no use for psychosis or schizophrenia.


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## Surfer Rosa

Yeah, that's another thing I mentioned on DPSelfHelp, how what we call the same condition (depression, anxiety, schizo/psychosis) could include several completely different problems. All we know is that schizophrenia is a pretty severe disconnect from reality often requiring medicaiton and a prognosis of some significant life difficulty. That is not really much information. When it comes to what exactly psychosis is and why it occurs...they are completely stumped, last I checked. The same goes for dissociation. I hope I live to see neurology advance to the point of deep understanding.


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