You may be surprised to hear that I suffer from a devastating and poorly understood mental illness. I'd like to tell you what it's like to live inside my head.
There's hope for people suffering from mental illness. Even if you don't suffer, I want to help you to better understand the many mentally ill people you are likely to encounter as you go through life, and explain why you don't need to shun them. I want to demonstrate that in fact, friendship with the mentally ill can be a rewarding experience.
Read on, and I will tell you how I recovered from schizoaffective disorder - but have not been cured. I will tell you how I learned to live with mental illness every day.
Being schizoaffective is like having manic depression and schizophrenia at the same time. It has a quality all its own though which is harder to pin down.
Manic depression is characterized by a cycle of one's mood between the opposite extremes of depression and a euphoric state called mania. Schizophrenia is characterized by such disturbances in thought as visual and auditory hallucinations, delusions and paranoia. Schizoaffectives get to experience the best of both worlds, with disturbances in both thought and mood. (Mood is referred to clinically as "affect", the clinical name for manic depression is "bipolar affective disorder".)
People who are manic tend to make a lot of bad decisions. It is common to spend money irresponsibly, make bold sexual advances or to have affairs, quit one's job or get fired, or drive cars recklessly.
The excitement that manic people feel can be deceptively attractive to others who are then often conned into the belief that one is doing just fine - in fact, they are often quite happy to see one "doing so well". Their enthusiasm then reinforces one's disturbed behavior.
I decided that I wanted to be a scientist when I was very young, and throughout my childhood and teenage years worked steadily towards that goal. That sort of early ambition is what enables students to get accepted into a competitive school like Caltech and enables them to survive it. I think the reason I was accepted there, even though my high school grades weren't as good as the other students, was in part because of my hobby of grinding telescope mirrors and in part because I studied Calculus and Computer Programming at Solano Community College and U.C. Davis during the evenings and summers since I was 16.
During my first manic episode, I changed my major at Caltech from Physics to Literature. (Yes, you really can get a literature degree from Caltech!)
The day I declared my new major, I came across the Nobel Prize-winning Physicist, Richard Feynmant, walking across campus and told him that I'd learned everything I wanted to know about physics and had just switched to literature. He thought this was a great idea. This, after I'd spent my entire life working towards becoming a scientist.
Here's how the symptoms of schizoaffective disorder appeared and how they impacted my life.
I have experienced various symptoms of mental illness for most of my life. Even as a young child, I had depression. I had my first manic episode when I was twenty, and at first thought it was a wonderful recovery after a year of severe depression. I was diagnosed as schizoaffective when I was 21. I'm 42 now, so I have lived with the diagnosis for 21 years. I expect (and have been emphatically told by my doctors) that I'm going to have to take medication for it for the rest of my life.
I have also had disturbed sleeping patterns as long as I can remember - one reason I'm a software consultant is that I can keep irregular hours. That's a primary reason why I went into software engineering at all when I left school - I did not think my sleeping habits would allow me to hold a real job for any length of time. Even with the flexibility most programmers have, I don't think the hours I keep now would be tolerated by many employers.
I left Caltech when my illness got really bad at the age of 20. I eventually transferred to U.C. Santa Cruz and finally managed to get my physics degree, but it took a long time and a great deal of difficulty to graduate. I had done well in my two years at Caltech, but to complete the last two years of classes at UCSC took me eight years. I had very mixed results, with my grades depending on my mood each quarter. While I did well in some classes (I successfully petitioned for credit in Optics) I received many poor grades, and even failed a few classes.
Schizoaffective disorder is poorly understood. Even mental health professionals know little about schizoaffective disorder.
I've been writing online about my illness for a number of years. In most of what I have written, I referred to my illness as manic depression, also known as bipolar depression.
But that's not quite the right name for it. The reason I say I'm manic-depressive is that very few people have any idea what schizoaffective disorder is - not even many mental health professionals. Most people have at least heard of manic depression, and many have a pretty good idea of what it is. Bipolar depression is very well known to both psychologists and psychiatrists, and can often be effectively treated.
I tried to research schizoaffective disorder online a few years ago, and also pressed my doctors for details so I could understand my condition better. The best anyone could say to me is that schizoaffective disorder is "poorly understood". Schizoaffective disorder is one of the rarer forms of mental illness, and has not been the subject of much clinical study. To my knowledge there are no medications that are specifically meant to treat it - instead one uses a combination of the drugs used for manic depression and schizophrenia. (As I will explain later, while some might disagree with me, I feel it is also critically important to undergo psychotherapy.)
The doctors at the hospital where I was diagnosed seemed to be quite confused by the symptoms I was exhibiting. I had expected to stay only a few days, but they wanted to keep me much longer because they told me that they did not understand what was going on with me and wanted to observe me for an extended time so they could figure it out.
Although schizophrenia is a very familiar illness to any psychiatrist, my psychiatrist seemed to find it very disturbing that I was hearing voices. If I had not been hallucinating, he would have been very comfortable diagnosing and treating me as bipolar. While they seemed certain of my eventual diagnosis, the impression I got from my stay at the hospital was that none of the staff had ever seen anyone with schizoaffective disorder before.
There is some controversy as to whether it is a real illness at all. Is schizoaffective disorder a distinct condition, or is it the unlucky coincidence of two different diseases? When The Quiet Room author Lori Schiller was diagnosed with schizoaffective disorder, her parents protested that the doctors really didn't know what was wrong with their daughter, saying that schizoaffective disorder was just a catch-all diagnosis that the doctors used because they had no real understanding of her condition.
Probably the best argument I've heard that schizoaffective disorder is a distinct illness is the observation that schizoaffectives tend to do better in their lives than schizophrenics tend to do.
But that is not a very satisfying argument. I, for one, would like to understand my illness better and I would like those from whom I seek treatment to understand it better. That can only be possible if schizoaffective disorder were to get more attention from the clinical research community.