Disclaimer: This essay is probably kind of a drag, just because my condition is kind of a drag, so skip it if you don't want to read Debbie Downer. This isn't a vent post. It's intended to give the sane a little insight into the mad.
I have schizoaffective disorder, bipolar type. The condition includes schizophrenia symptoms and symptoms of bipolar mood disorder. In my case, my psychosis and mood swings are handled pretty well with medication, but the other symptoms - particularly of the schizo side of the disease still seriously affect me day to day.
Being medicated is not a lot of fun. At least unmedicated I could find some amount of pleasure in my manic states, but on the meds everything is blunted. I become impossible to live with and care for when I am unmedicated, so I take my meds for the sake of my spouse, but not so much for me. I could write far better when I was unmedicated, so you'll have to bear with me.
I aim to take you through some of the symptoms as I experience or have experienced them. Hopefully it will give you an inside glimpse at madness. Maybe those of you already familiar with madness can find some common thread herein.
Adventures in Diagnosing
Diagnostic paths for mental illnesses are often bumpy roads that may require several different opinions from different doctors. In fact, due to the nature of psychiatry, I recommend getting second and sometimes third opinions in any case.
I was initially "diagnosed" with bipolar one (which is "manic-depressive" with psychosis) in the emergency room of a hospital by a nurse. I was in that emergency room because I was manic and psychotic for well over a week and my partner finally convinced me to go with to the ER. They offered to commit me to the mental hospital (which here is inside the regular hospital) and my spouse declined and told the doctor he'd care for me after I told him they wouldn't let me smoke and I'd lose my shit.
So for about three months or more I thought I was simply bipolar. The mental health professionals I was seeing were running with that bipolar label even though it wasn't an official diagnosis - since it had been given by a nurse. Getting in front of an experienced and competent mental health professional is not so easy, especially in my country, and especially if you don't have ridiculously good insurance. If you're on Medicare/Medicaid you can forget it. Pay out of pocket. The first one I went to refused to even evaluate me to update the diagnosis even though I was showing symptoms other than bipolar.
It was my spouse pouring over the DSM that informed us of schizoaffective disorder. My symptoms are pretty textbook for that illness so it was an easy connection to make. Armed with this information/possibility we set out looking for a good psychiatrist, and finally found one in private practice about a 30 minute drive from us. That's what it took in the end. Letting the therapist know my symptoms, and asking about schizoaffective disorder I think helped - then they knew what to look for at least. I secured that diagnosis and then also got a second opinion as well. I still go to that psychiatrist today despite the drive.
Living With This Mess
I was sick for a long time before I knew it. It should have been obvious the way my adult life had been going, but it wasn't to me. I knew I wasn't normal, but I didn't know how sick I was. I thought I was just different. My parents didn't know, so the early symptoms I exhibited such as the extreme mood swings, were attributable to me being an asshole teenager. My mother called the cops on me repeatedly because of my behavior. She should have had me sectioned instead.
I didn't have psychosis until a few years ago, so I went through my childhood and most of adulthood without any idea I was sick. I had a career in software, which people with my condition simply don't have. We can't hold down jobs. We can't manage things like deadlines. Nobody informed me of that however, so there I was. It helps that I wasn't as sick as I am today. Looking back, my career was rocky. I was good at coding, but not any of the soft skills necessary for a job. I was really difficult to work with but people worked with me because I was a damned good developer. I'm sure I was expensive to manage - I was even told that by an employer once.
My career was there, but my home was a wreck whenever I lived by myself, and generally my personal life was a rolling disaster. My partner who has known me since I was 17 and he 15 always told me I needed to be in a group home. He wasn't wrong, but I thought he was just messing with me. I refused to believe I needed help.
Even when I'd get arrested from time to time (most recently in 2006 because i drank way too much, blacked out and apparently broke a door to a clinic), police would mention at my arraignment that mental health might be an issue. I balked, and got myself a lawyer. Every time. That's the problem with being sick and having cash. I had options, and I didn't choose the right ones.
Going Psychotic and Other Hobbies
Psychosis can be fun. It can be enlightening because it is like looking at the world with the brain's filters turned off. Imagine our brains cut out a lot of what we see and hear, because it isn't real (i think this is actually how it works anyway but don't quote me) - what we're left with is roughly reflective of reality, but it had to be pruned by the subconscious mind for us to make sense of those sensory inputs. If any of you have ever taken hallucinogens you'll have at least a vague idea of what I mean above I think. You see it all.
I really enjoy mania induced psychosis because it feels like I have access to the world that exists underneath what we perceive as the world. I've seen the whole of creation unfold before me and it was breathtaking. If I lived 6 lifetimes I'd never see anything so beautiful again. I felt intensely spiritual. Magic was everywhere, and I could understand it and it work with it. I found amazing patterns everywhere I looked, including in scripture. Some of what that "taught" me I still hang on to today, because despite coming to me whilst psychotic, it wasn't all garbage. Some of what I discovered about scripture for example, was legitimate.
Some of what happened to me changed me for good. Even the way I write software is different now, more fluid because I don't have to think about it anymore. I learned to background it reliably so I don't have to devote conscious thought to it a lot of times. That's a trick I learned while psychotic, and it has proved useful to me since. I can now hold a conversation whilst coding. Unfortunately, since my last major psychosis of this nature, some of my other symptoms got much worse, and I think they're related.
I also experienced another form of psychosis, this coming from the schizo end of my illness, and it was terrifying. "Bad magic", bits of the universe I could see that would harm me if I got too close, and the "night people" who wanted to turn me into one of them ruled this experience. The "night people" are particularly terrifying because they're constructed from my deeply seated core fears - pure nightmare fuel. These experiences are not fun at all. Sometimes they can be interspersed with the good ones, leading to a confusing rollercoaster of fear and elation.
Negative Symptoms
A positive symptom is a symptom that's present in a patient that's not found in healthy people - like psychosis
A negative symptom is a symptom of something that's not present in the patient, but is present in healthy people, like the ability to feel pleasure.
The negative symptoms of my condition are debilitating and not very treatable. They include but are not limited to social isolation, a diminished capacity to feel pleasure, disorganized thinking, diminished motivation, and depression that's not responsive to medication.
They're the worst simply because they resist treatment, and the meds don't help, so they're what I have to live with.
The social isolation may be the worst for me. I can't really form and maintain social relationships like I could before I got really sick. I avoid people, in part because of my fear of the night people - even though I no longer believe in them the fear is still there - but mostly I think because that part of me just doesn't work anymore. I don't call people, nor will I keep a phone. I barely leave the house (I also have a panic disorder, which gives me panic attacks while I'm out) and when I do it's with my spouse, not alone. My friends either bailed when I got sick, or we fell out of touch when I became a hermit over the past few years. It doesn't stop you from missing having people in your life. It doesn't stop you from getting cabin fever. It just means there's often no way to be content or comfortable. The only way to be my friend anymore is through concerted effort, because I don't reach out to people anymore. I just don't have it in me.
What I think scares me the most however, is losing interest in my hobbies. Without those I'd just be waiting around to die. Anhedonia (the inability to feel pleasure) and avolition (being unable to be motivated) are terrible symptoms of schizoaffective and schizophrenia disorders. Talk about being zombified. What is someone that is interested in nothing and has no motivation? I fear that.
The disorganized thinking and behavior affects others more than it does me. I talk to myself, I can't foster and keep routines which affects everything from eating regularly to personal hygiene. I have a partner who is home frequently and is good about taking care of me, without which I'd be a mess. These issues don't cause me direct personal grief but they do affect other people, because I'm not so hot at taking care of myself without help these days. I don't like the loss of independence but it's something I can at least see myself being able to live with in the long term.
Prognosis
The prognosis for my illness isn't great, because it's not entirely treatable, and it's pretty debilitating, but schizophrenia, which is like a sister condition to this is worse, prognosis-wise, so at least I didn't end up with that. Schizophrenia runs in my family, however. When I was young - about 18 or 19 I feared I was going to end up with schizophrenia. Turns out, I wasn't far off.
In any case, there are very few jobs I can work at, so I hang on to the one I have, despite it being something that would otherwise be well beneath me due to my skill set. I went from coding for Microsoft at 18 to cleaning toilets at 40 because of this condition. Fortunately, I work alone - am not out of the house for more than an hour and a half at a time, I set my hours, and I don't speak to my supervisors for months on end. That's the sort of job I can do these days. Anything more than that and at best I get panic attacks, at worst I have another breakdown and sink further into my illness, which has already happened a couple of times.
I've accepted that I'll probably never have anything resembling a normal social life anymore. My outlet is online because it's what I can do. At least I'm married so I'm not totally alone.
Conclusion
I don't have some sort of happy ending for you. The condition sucks. Medication ostensibly helps keep it from getting worse, but it doesn't make people any better. It just fixes some of the symptoms. Cognitive Behavioral Therapy with emphasis on patients with psychosis can help with some of the negative symptoms, but how much is questionable. I've got my spouse, and I've still got my physical health. Fuck the rest of it.
