15 years, still unsure of schizoaffective diagnosis

I begin this stream-of-consciousness dump with the obvious caveat: I’m not a doctor of any variety, capacity, or ability.

Received a diagnosis of schizoaffective disorder (believe the doc said “bipolar type”), 2007. While I was on disability, had a review by another doctor in 2010 who I guess confirmed that diagnosis, since disability payments continued until I ended up employed some time later. Spouse confirms from outside observation that the diagnosis seems accurate. While I was on meds for a time (Zoloft, Invega), I eventually stopped taking them fairly early on, from a combination of side effects, and lack of (at the time) income to afford them. I’ve not been on them since.

It would seem, all considered, that these combined factors would make accepting such a thing very easy to do, yet I find it difficult to. Stories I read/hear from others with the diagnosis rarely feel like my experiences, and while symptoms I’ve found in online resources match in some ways (difficulty with emotional expression, disordered thoughts, tendencies towards isolation over socialization, and as my spouse notes, a number of physical tells/tics), it doesn’t seem to match in others. Hallucinations seem exceedingly rare, and often olfactory rather than sounds/voices. Visual ones, I could probably count on one hand over 15 years. I’ve not seen mention of habits like chewing on fingers, yet the ends of my fingers are calloused beyond recognition from an apparent inability to stop doing this.

Not sure if I’m unconvinced of the diagnosis still, or perhaps failing to understand how it seems from outside observation versus internal. I’ve managed to hold down a fairly stable and comfortable career for over 10 years now, though it’s been entirely remote work. If someone told me I’d have to be in-person to continue, I probably couldn’t do it. I certainly couldn’t before the diagnosis (panic attacks were constant and worsening), and being isolated from crowds for this long has, I’m sure, done me no favors for that kind of integration, even if I wanted to, though I don’t. Frankly I’m more than comfortable in isolation, the sole downside being connecting with others outside my immediate sphere is extremely difficult, if not impossible.

I don’t feel helpless, and honestly have fought fiercely to be as independent as I am. Spouse and I are comfortable enough. We live in a nice place, have the essentials, and get nice things now and again. It’s almost hard to imagine being where I am, after being in crushing poverty for so long before that. It’s only in the last year that we’ve lived this way longer than being impoverished, yet the thought of returning to that life still terrifies me beyond description. I’d do just about anything to never live that way again, to be in constant fear of everything from the surrounding environment to not knowing when or if food would come.

Well, this started as a kind of question, and now I’m not sure what it is. Maybe the diagnosis was right, maybe wrong, I don’t really know. I don’t know if I ever CAN know for sure, since I’m the allegedly affected party. Critical fact-based analysis is intrinsic to how I keep things organized, and I know one cannot self-observe objectively. Maybe I just wonder if there’s anyone else like me, at all. So far, it doesn’t feel like I’ve ever found one. It’s kind of amazing how alone one can feel in their existence, no matter how many people they know.


sup, welcome to the forum. if you open up about the specifics of your experiences, you’ll probably find a few people who can relate.


Not sure how specific people are expecting me to get. Feel like I’ve told this same story a hundred times over a decade, and been met with silence every time, no matter where I go. For all a given place touts familiarity, acceptance, and understanding, I’ve truly never encountered it anywhere.

This isn’t directed at you specifically, just a general vent. I just don’t know what I’m supposed to say or do anymore. It’s a lot of built up bitterness and resentment over a very long period of time that has never been resolved. I recognize that isn’t anyone’s fault here, of course. Don’t mean to imply that at all, if it seems that way. Being proactively open about specifics has historically done more harm than good, so what might work better here is directed questions or something similar. I frankly don’t know how to voluntarily open vulnerabilities anymore.


All I can really say is that it’s a spectrum.

That’s not a straight line by any means, but the hip and cool wheel of dis functionality people seem to relate to these days - but it does seem to explain things better

It seems to me that you’re very beaten down, but you have described some good things in your life

If you’re financially stable, and not wanting for anything, that’s a great achievement!

You have a spouse as well, so you’re many times greater in the support structures than someone fighting this alone

I think you may be a bit low?

The SZA might not fit you completely, but you do not have to have every symptom to qualify for diagnosis.

That said, if you think things are getting on top of you, if you have been in touch with MH services, then perhaps you may need them again to re-evaluate and see what they can do - if anything.

Try to look at your post again, and pick out the good things, as there is a real conflicted mixture of things going on there.

I can see them, but maybe because I don’t have them and romanticise about having it.

The only thing relatable is career. I have worked throughout and only now am I coming crashing down and burning in flames with my job and finances.

Just keep your chin up.

You’re clearly someone with grit and resolve, but you need to give yourself some room for acceptance and a break

Sorry if I am not making the points you were looking for - your post was quite long.


@Kalgan, I’ve noticed through being on this website for a long time, that an awful lot of people, both old and new, like yourself, with the diagnoses of either bipolar or schizoaffective bipolar type, either complain about, or question their diagnoses openly and frequently on the forum. So, your post is neither uncommon or surprising.

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How long have you been off meds?

@SkinnyMe: That’s weirdly assuring, if curious. Wonder what the common thread is there?

@Aziz: About 13 years. Aside hitting a long stretch of not being able to afford them — even when I could again, the side-effects were (in my opinion) a significantly larger downside than what they fixed.


@Kalgan , I also spent many years (10), employed at a relatively high paying job, as an RN, while very ill with depression and schizoaffective bipolar type. My symptoms back then mostly consisted of severe depression and suicidality, paranoia, olfactory hallucinations, and chronic, almost constant pressing of my lips together either with my lips or sometimes with my fingers. I couldn’t stop this latter no matter how hard I tried. I’ve done it since I was 9 years old and I’m still doing it. I’m 62 years old now. So, I can definitely relate to your story.


The tics are SO frustrating, aren’t they?! Consciously, I know I shouldn’t have this habit. I get it’s probably wrecking my fingers, cosmetically if not mechanically. Make every effort not to do it. Then notice it’s happening again, minutes later, the instant I stop paying attention to it.

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If you are looking for an opinion, and I am not a doctor, I would say if you have never had delusions, you are most likely not schizoaffective. You also don’t mention any symptoms of mania, so I presume you haven’t had that. Being less social can be because of many things. I am not aware if biting the nails is related to schizophrenia/affective.

I think you have a fear of social situations. Do you bite your nails because you are nervous?

Also, please go to a top doctor and tell him you doubt your diagnosis. He could guide you better. In my opinion you can take treatment with any doc you like, but for something as crucial as your diagnosis, you need a top doctor. Find the best one you can find, pay him once, get the correct diagnosis, and then decide on your treatment plan.

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Yeah, I’m that way too. And my lips are either raw or scabbed all the time.

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Is this a dig at me @SkinnyMe? lol… :smile:

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What do you mean @Wave ?

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No I’m kidding @SkinnyMe
I’ve been known to question my bipolar diagnosis over the years.
Confused whether Schizoaffective would be a more accurate diagnosis.


Explain please @Wave .

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I explained myself to you @SkinnyMe

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Sorry, I didn’t give you enough time to respond. Thanks.

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It isn’t nail-biting, it’s finger-biting. The entire end-digit, chewing on it absent-mindedly with molars. The tops of my fingers are calloused in a very visually obvious way. This isn’t prompted by social situations, or any specific situation I can identify. It’s safe to say I have a strong aversion to social situations, but nervousness isn’t something I’d use to describe it. More like revulsion.

Delusions is a hard thing to quantify. How can I objectively call something I believe a delusion, if I believe it? There are some things I know are off - a serious aversion to specific numbers, certain habits I have to do in specific situations - but docs seemed to rule out OCD, if that thought crossed your mind. Didn’t meet other criteria for it.

From my understanding, the category of “delusions” is a lot broader than someone believing themselves to be Napoleon, and hosts a wide range of possible beliefs. The core criteria seems to be “a firmly held belief that doesn’t conform to reasonable or cultural norms”. It also isn’t the sole (nor a single) mandatory criteria for positive symptoms.

I can recognize what I’d call episodic delusional beliefs, periods where I strongly believe in what a reasonable person would call paranoid thoughts. They aren’t indefinite periods, but they’re definitely strong periods, overwhelmingly so at times. Fortunately I’ve gotten good at identifying those periods, and usually just self-isolate until it passes, whether it be hours or days. Once the proverbial fog clears, it seems better.

Having looked more into it, I think my confusion stems from the episodic, rather than chronic, nature of many schizoaffective symptoms. The worst parts of it aren’t constant (though utterly debilitating when they flare up), and while the rest might be constant, they don’t seem “off” to me, since it’s all I’ve ever known. I can remember a time when Invega cleared up some of that, but the side-effects were (imo) not worth it.

Maybe more than anything, I just needed to vent. I’ve had so little luck finding people like me (other than here, now!), and it’s this weird kind of invalidating feeling, if that makes any sense. The popular mental health narrative is utterly dominated right now by ADHD, autism, and depression, which puts disorders like this one - already stigmatized by being an S-Word - on the furthest of back burners.

Also, sorry about the walls of text. Gears get turning and words just blast out like a poorly regulated fire hose. :rofl:

You have had any classical symptoms of mania?

Racing thoughts, flight of ideas, increased energy, etc, etc?

The way you are getting the schizoaffective diagnosis is that, since your delusions are episodic, and not chronic, it must be schizoaffective rather than schizophrenia. But, my question is, none of what you are describing are classical symptoms of mania. So, if it is not schizoaffective, it is certainly not schizophrenia (as in schizophrenia psychosis is chronic).

I can’t really say for certain you have schizoaffective. Get an opinion from a different doctor, as well…just to make sure.