The evolution of a diagnosis
You look “normal”
To most people, I look “normal.” I’ve had countless people tell me that I don’t look like I have a mental illness, particularly one as severe as schizoaffective disorder. Sometimes they question what would actually happen if I stop taking my medications. I’ve even had two psychiatrists and an urgent care physician question my diagnosis before really listening to me and my story.
What I’ve gathered from all of this is two things. First, the stereotype that all people with schizophrenia are bedraggled and screaming at things that aren’t there is, unfortunately, still alive and well (but we’ll cover that more in another post). Second, I’ve learned that people would like to believe that someone who looks like they could be your friend, sibling, or coworker couldn’t possibly live with something so seemingly devastating. The doctors who’ve questioned the diagnosis upon first meeting seemed to be under the impression that my schizoaffective diagnosis was made hastily and without caution, so let me take a moment and explain from where a diagnosis like this comes.
It begins as a handful of symptoms
I entered therapy with depressive symptom, and they started me on an antidepressant and a medication to help with insomnia. The working diagnosis was depression. While it seemed very likely that this was simply depression, the doctors had known me for only a few days. We didn’t complete a full scale clinical interview like they do in research labs, and we didn’t have any proof that I would respond to treatment for depression. But that was our starting point.
While we were sorting out which antidepressant worked best for me, I heard something. And then two somethings. It was at this point that the dosage of the pill I had been given to help with sleep started creeping up. It turns out it was not originally created as a sleep medication, that was just an alternate use for it. It was actually an atypical antipsychotic. My working diagnosis was upgraded to depression with psychotic features.
What are psychotic features?
Psychosis and schizophrenia are not the same thing, nor do they have a mutually exclusive relationship. Psychosis is actually a group of symptoms, including things like hallucinations and delusions. Schizophrenia consists primarily of psychotic symptoms, but there is more to the diagnosis than that. Both depression and bipolar disorder can have psychotic symptoms, often referred to as psychotic features, but the mood symptoms are still the star of the show.
My doctor thought that I was treading the path of depression with psychotic features. That is, until the depression settled down and the hallucinations grew and more psychotic symptoms made their entrance. After several auditory, visual, and tactile hallucinations and quite a few disorganized thoughts occurred in the absence of the depression, the diagnosis evolved again.
“It’s looking to be schizophrenia”
I will never forget hearing my doctor say those words. But over a period of time, we could see that the depression was actually just as prominent as the psychosis. The depression would start things off, drum up some psychosis, then hit the road and let the psychosis do its thing, only to return again later. That’s depressive type schizoaffective disorder in a nutshell. And that’s the diagnosis that’s been confirmed by every psychiatrist who has treated me long term.
Doctors often start at the bottom and work their way up, crossing off things that could be treated with no, fewer, or at least less hardcore medications and other forms of treatment. And diagnoses like schizophrenia shouldn’t be something people give out lightly – it can impact someone’s life in significant ways even if it’s not the final diagnosis.
But treatment should be personal
I’ve found that for the doctors with whom I’ve had the most treatment success, it’s more about treating the person in front of you. Yes, there are certain medication rules with certain disorders, like how people with bipolar disorder can become manic if given traditional antidepressants, but the diagnosis really only provides a guideline. There really isn’t a one-size-fits-all answer because you are not a diagnosis. You are a human being with unique experiences. Be it doctor or friend, don’t let anyone make you forget that.
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