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.
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.