What the f#$% is schizo-affective disorder?

Schizo-affective disorder and I have gotten to know each other pretty well in the recent years, but not many other people know what it is.

I remember when I first heard of it. My GP and I were sat in his office. We were discussing my downfall, and finally working on a referral to a psychiatrist. He needed to give them a preliminary diagnosis. He heard me out – he listened to my symptoms, looked back on notes from previous visits. He told me not to flinch at the words, and then he said them: “Sounds like schizo-affective disorder. I can’t diagnose and treat you for it, so we need to scare the psychiatrist into seeing you as soon as possible.”

Apparently schizo-affective disorder was enough to push me to the front of the line. I had an appointment within two days.

It sounded so intimidating. The ‘schizo’ part just screams out ‘you’re crazy!’ I didn’t know what to think of it. Mainly because I didn’t really know what it was. There isn’t exactly a way to describe it clearly. In fact, it’s not very well understood at all – not even by the doctors – which is why it took so long for me to be properly diagnosed.

Schizo-affective disorder, at the end of the day, is a mix-match of schizophrenia and bi-polar disorder. It’s a hybrid of two very well-known mental illnesses, but it means something different for everyone with the diagnosis.

Some people with schizo-affective disorder may only have very mild schizophrenic symptoms. Some may have very severe ones. Some may have seemingly none at all.

Schizo-affective disorder can disguise itself unintentionally. Since it embodies characteristics of other better-known, more common disorders, it can be extremely difficult to recognize.

So difficult, in fact, that it took over a year for my doctors to finally agree that I might indeed have the disorder.

The problem with diagnosing a mental illness is that there is usually nothing physical to examine. Doctors rely greatly on a patient’s own description of their symptoms. The problem with this is that many people suffering from mental illness are unable to articulate what’s happening in their mind, and therefore can’t always provide the information the psychiatrist needs. I was no different.

My doctor asked me if I had any close friends who would volunteer their time to speak with him.

About me.

That made me feel uneasy. One of my main concerns was people talking about me. It’s the last thing I wanted. At first I refused. I used the excuse that no one knew what was in my mind anyway, so they’d be useless. He assured me my behavior was just as important as my thoughts.

Nick came with me to my next appointment.

We sat there all together, the three of us. I remember feeling really nervous. I never knew what to say at these appointments. What was I supposed to tell the doctor? He’d ask me how I felt, I’d say I felt bad. He’d ask me why, I’d say I didn’t know. Isn’t that why I was there in the first place? Because I didn’t know? Surely, if I knew why I felt so horrible, I would do something about it that didn’t involve sitting in an uncomfortable office.

I started to cry. He asked me why I was crying. I didn’t really know why – I just felt overwhelmed. He told me to relax, Nick told me to relax; everything was fine. They started to talk about my moods, my behaviour, my sleeping patterns. I don’t remember any specifics. I was in the room but I was in another zone.

He talked with Nick for a while, then he talked with me for a while, and then Nick and I went home… with another few surveys to fill out.

Eventually, many appointments and surveys later, my psychiatrist came up with a final diagnosis: schizo-affective disorder. Surprise, surprise, my GP had been right all along!

In order to decide which medications to use, we had to really discuss my symptoms in depth. As with any mental illness, schizo-affective disorder needs to be treated differently depending on how it is manifesting itself in the patient. There is no magic medicine designed specifically to fix up a person suffering from the disorder.

For example: schizophrenic symptoms come in many forms. Auditory hallucinations, visual hallucinations, paranoia, delusions, disorganised thought and speech. The list goes on.

The affective (mood) symptoms also vary greatly. Some patients might suffer only slightly – others, nearly exclusively – from mania. One person’s manic symptoms may differ from another person’s. Some people may experience depressive episodes more strongly. Some, like me, may have a nice mix of the two.

For me, the ‘affective’ aspect of the disorder was always quite clear. That’s probably why I was misdiagnosed as having bipolar disorder. I had week- or month-long episodes of depression, followed by episodes of mania lasting a similar amount of time. This had already been going on for years.

My schizophrenic symptoms, however, were harder to pinpoint.

I had hallucinations, but I was always able to recognise that they were simply that: hallucinations. Typically, they’d be visual (but I did have auditory ones as well): I’d see a person out of the corner of my eye. If I kept them in my peripheral vision, they were very much there, but as soon as I’d turn to them, they’d disappear. This is how I was able to distinguish between real people and fabrications of my mind. Since I was aware I was hallucinating in the moment, my psychiatrist figured it didn’t really count, and more or less dismissed the hallucinations entirely.

One symptom he definitely focused on was my delusional thinking; I would create wild stories in my mind and believe them. I was convinced everyone in the subway was staring at me and talking about me. I thought people were watching me all the time. At one point, I genuinely believed Nick was an alien. He has a vein in his forehead that sometimes buldges out, and my mind came up with an explanation for it: he’s an alien, obviously.

Despite having these crazy thoughts on a regular basis, I would also have spouts of clarity where I realised how ridiculous I was being. Did I really think that Nick was from another planet? At some moments, yes; at others, no, of course not. I was always sane enough to hold back from sharing my ideas with people, because I didn’t want them to get the wrong impression and think I was a whack job. I definitely did have some crazy thoughts, but the crazy never took over my mind for too long.

I always snapped out of it.

But the reality of the situation was that, although I wasn’t suffering 100% of the time, I was still suffering. I was still delusional and paranoid. Although I could distinguish between hallucinations and reality, the hallucinations were still very distracting. These things were having a big impact on my every day life, and something needed to be done about it.

So, we started to experiment. We stuck with the quetiapine, a drug I had been on for months to help me sleep, and tried a few different medications before we reached a cocktail that was suitable. Finally the tunnel was getting a little brighter.

My treatment doesn’t rid me completely of the effects of my disorder; I still suffer from all things listed above – just on a much, much milder level. I can live like a regular person 75% of the time, but I still have days where I can’t get out of bed.

Schizo-affective disorder is probably going to affect me for the rest of my life but, it isn’t going to dictate my life. That’s my job. I’m still in charge here.

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The beginning of schizo-affective disorder

Looking back, I realise I was 21 when schizo-affective disorder decided to make itself known. This is around the time it strikes most of its victims – I was no different. I wasn’t familiar with the disorder back then, but we’ve become pretty well-acquainted over the last couple of years.

I didn’t just wake up one day and recognize it – I think I always knew I was a little off. But, I guess things just gradually got more and more ‘off’. Eventually there was no denying that my mind was no longer stable.

I’d been on anti-depressants regularly since I was 19. I had never seen a psychiatrist; I never felt like I needed one. My GP and I decided together that my condition wasn’t severe enough to warrant the long wait it would take to get me into a specialist. He prescribed me some Sertraline and sent me on my way.

It helped. Until it didn’t.

After being on varying doses of Sertraline for over a year, my symptoms started to worsen. It went from bad to ugly. Quick. I later found out that while Sertraline can help depression, it can actually have negative effects on those with schizo-affective disorder.

First, it started with the sadness. That overwhelming feeling of worthlessness. That stereotypical depression everyone talks about. I felt useless. I felt alone. I felt tired. I cried. All. The. Time.
It didn’t matter where I was, or who I was with. Those feelings were constantly nagging at me, and I couldn’t silence them no matter how hard I tried.

Then came the madness. I went berserk. I would flip out over nothing. I was incredibly jealous. I was constantly angry – irrationally angry. I created these ideas in my mind – these scenarios where people were secretly plotting against me. Everyone was an enemy. Everyone hated me – I knew it. No one actually cared about me. They didn’t want me around.

That would loop around again, and after a few weeks of being angry all the time, I’d snap back to reality. For a minute. I’d realise how insane I had been – I’d look back at all the things I had said to people, the thoughts I had had about people, and I’d hate myself for it. I’d be embarrassed by it. And then, I’d get depressed again. I’d tumble back down the sadness tunnel and I wouldn’t have the energy – or the desire – to climb back out.

One day in particular stands out to me.

I finished my day at work, and walked outside. It was always like this: an almost immediate change in my state of mind. At work, I could pretend. Because I had to. Outside of work, the break was over.

I knew I didn’t trust myself that day. I knew that if I was left alone, I was going to do something. So I called Nick. I asked him if he would hang out with me when he got home from work. It was a Friday night, and he had plans. Obviously. Expected. It’s Friday. People go out on Friday. It’s the end of the work week. We live in the beer capital of the world: Friday is beer day!

But it wasn’t okay for me, and I knew it. But, I cared more about what people thought of me than I cared about my actual self. I didn’t want to be the ‘nagging girlfriend’ I already feared his friends thought me to be. So I pretended it was fine.

“Okay, so I’ll be alone tonight.” I thought about it, and all I could do was cry. It was one night. One night I was going to be alone. Just one night, and I couldn’t handle it. I can’t begin to explain what was happening in my mind, because I’ll never understand it. It isn’t me. I just knew I couldn’t be left alone.

So I sent him a picture of the train tracks, and then I turned off my phone.

Why did I send him a picture of the train tracks? A number of reasons, I’m sure.

I think the number one reason though, is because at this time, I still struggled with actually asking for help. I hadn’t admitted to myself out loud yet that I needed it.

I took the first step by calling him and asking him to stay with me. He said no, but only because he had other plans. And because I never told him I needed help. I was really struggling. But how was he supposed to know that? Having him reject my well-disguised offer to save my life left me feeling even more hopeless.

But I still didn’t want to give up just yet. So I sent him those train tracks. Then, I turned off my phone, and I went home. I ran a bath. I had a few drinks. I got in the tub.

Unbeknownst to me, Nick is in a panic. He probably realized, thanks to those train tracks, what that phone call really meant. He probably remembered my unsteady voice on the phone, and pieced it together. After trying and failing to phone me, he left work early and rushed home. He got there just as I was falling asleep in the bathtub.

This was only the first of several near-suicide attempts. Thankfully, I never even came close to accomplishing what my confused mind was telling me to do.

After that day, Nick never even hesitated about staying home. I’d get angry at him for it. I’d blame him for his friends hating me. After all, they ‘hated me’ because I was the ‘nagging girlfriend’, right? What do nagging girlfriends do? They prevent their boyfriends from going out and having fun. Ultimately, yes, I was preventing him from going out and having fun. But I wasn’t doing it on purpose, and he was never resentful to me. It was always his decision to stay home. That’s all that should have mattered to me (but of course I didn’t see it that way then).

This was only the beginning of what turned into over a year of serious struggle. Not only for me, but for everyone around me.

My doctor decided it would be best to get me into a clinic to diagnose me properly. I agreed to go for two weeks.

While I was in the psychiatric hospital, I had to fill out a number of surveys. I had regular meetings with psychiatrists. I had brain scans. I went in for electrocardiography. I had to have blood and urine tests done. They encouraged me to attend group therapy sessions, but I never went. I left the hospital after one week, with a diagnosis of bi-polar disorder type 2.

After my experience in the hospital, I didn’t want to see any doctors for a long time. I avoided my psychiatrist like the plague. I didn’t go to my appointments, and I never called to reschedule them. I took the medicine they gave me at the hospital until it ran out. Then I didn’t take anything at all. I’m sure I don’t need to tell you that I started to fall back down the tunnel within a few days.

Even then I was still stubborn. It had been so long by this point that I was embarrassed to go back. I thought about getting a new doctor altogether, just to avoid telling mine why I disappeared. Then one day, something took over me. I was in town, and almost on auto-pilot, I walked to my psychiatrist’s building, went up the four flights of stairs to his office, went straight in, and asked for an appointment ASAP.

They hadn’t seen me in months. I never checked in after leaving the hospital – somewhere my psychiatrist had actually sent me himself. They weren’t bothered at all. They were just glad to see me again, and booked me in for the following week. Breathe. Relax. Relief.

When I finally went in for my long-awaited appointment, my doctor wasn’t happy with the diagnosis I had been given at the hospital. He wasn’t happy with the medication I had been on, and he wasn’t happy with the fact that I only stayed for one week.

He wanted me to go back. I refused. He said it was for the best – that way I could be constantly observed during all courses of whatever illness I was suffering. I could get a proper diagnosis and treatment could start right away. I still refused. He couldn’t admit me against my will, so he had to accept my choice and treat me outside of the hospital.

He gave me more surveys to fill out, and started me out slowly on some new medication. The first problem he wanted to tackle was my sleeping patterns. Or, lack thereof. He figured if I could get some well-needed sleep, my head would be more stable overall, and it would be easier to diagnose me. He was right. He prescribed Quetiapine, a god-sent. It’s an anti-psychotic which can be used to treat insomnia in low doses. Perfect for me. It worked, and it still works to this day. But it only fixes half the problem.

We still didn’t know what the other half of the problem was at this point.