Sunday, March 10, 2013


Before I go any further with this blog, I want explain my technical diagnosis.  The docs call it "schizoaffective disorder."  According to the NAMI website:

"Schizoaffective disorder is a serious mental illness that affects about one in 100 people. Schizoaffective disorder as a diagnostic entity has features that resemble both schizophrenia and also serious mood (affective) symptoms."

Why I bring this up is because most people don't know what schizoaffective means. I noticed in rooting around online that the subject doesn't get as much attention as bipoloar disorder or schizophrenia by themselves, yet the diagnosis indicates that I have both, which is more concerning than having just one.  I like to break it down and explain that I have been diagnosed with two separate illnesses, because really, when I say "schizoaffective" most people just don't get it.  But both bipolar disorder and schizophrenia have gotten a lot of attention. Also, to just say schizoaffective is a bit vague, since it indicates that you have some kind of mood disorder and some kind of serious psychosis.  I find it helpful to be specific.

What startled me when I went to the NAMI website was that part of the quote that says that schizoaffective disorder affects about 1 in 100 people.  To me, that seems like a really significant number of people.  In the U.S. alone that would be over 3 million people.  I wonder, too, how often people go undiagnosed?

The duration of time, from the time of my initial diagnosis of bipolar, to the time I was told I was schizoaffective due to also being schizophrenic, was twelve years.  The main reason was that I was so schizophrenic that I couldn't even articulate that I was hallucinating.  The presence of voices and delusions fed into my psychosis (I thought that I was psychic and telepathic and that I was "listening" to things going on about me.  I didn't think anyone would believe me if I told them that, and I had no one to tell anyhow, because I was sure that everyone was out to get me).  How many other people don't even know to ask for help or how to go about it?  I've heard it's typical that people go about 10 years on average before they get the correct diagnosis of a mental illness, so I'm sure I'm far from alone.

For the purposes of this blog though, the actual most important diagnosis is the "dual diagnosis" of mental illness and substance abuse issues. i've also heard it called "MIS" for menatl illness and substance abuse.   It's easier than it used to be, not to be tempted to self-medicate, because I have such a supportive network and environment, but that doesn't mean that I don't always have to flick away the idea when I'm anxious, which is quite often.  But it's particularly dangerous to use while you're on meds (not to mention using instead of meds). 

So, yes, technically I am "schizoaffective" and maybe if that term comes into more general use, I'll use it as a descriptor more often.  In the meantime, I feel that what's important is to continue to educate people about what it means.

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