Schizophrenia’s Gradual Onset: Why Diagnosis is Difficult

I have a big speech to give in two days. Fellowship Place in New Haven, CT, whose mission is to “help adults with mental illness lead more meaningful, fulfilling and healthy lives by offering resources, education, and opportunities,” has asked me to be their keynote speaker for their Eighth Annual Dr. Albert Solnit Memorial Lecture.

This is not so much a fundraiser as it is an awareness-raiser, and I want to do justice to that purpose as I prepare my part of the evening, an hour-long “Conversation with the Author of Ben Behind His Voices.”

My problem: how to tell our family’s story, and Ben’s story through our eyes, in a way that will raise awareness? And while I blog often about our current issues as Ben struggles through recovery, for this presentation I need to go back to the early years of his illness to set the stage for the conversation.

[caption id="attachment_62" align="alignleft" width="150" caption="Happy at Play"][/caption]

Sure, I went down memory lane to write the book, but here I will be telling it not through the written word but in person, and can use images and sounds to complete the picture. No recent photos, of course; Ben does not want this, and I honor that. He agreed to let me write the book, after all, as long as no current images or his real name were used. I can, however, use some childhood pictures, and I also have some of his writings and taped conversations from his teenage years, when schizophrenia began to emerge gradually.

The memories are hard to face, even now: Ben’s insistence that he had special gifts, that he could read minds, show up in likely places due to “time slips.” There is even a conversation where, in the middle of talking to be, he says, “Quiet, all of you!” Ben and I were the only ones in the room at the time.

I’d forgotten this incident; now I look back and think, how could I not have known what was wrong?

The answer” as NAMI tells us in Family-to-Family, “You can’t know what no one has told you.” Now I know that an educated family is one of the essentials of recovery for Ben – but then? I was drowning in confusion.

Years later, at a schizophrenia conference at Columbia University, I learned that the illness blooms as either early-onset, sudden-onset, or gradual-onset. That last one is most common. While the illness develops, it can mirror so many other things: ADHD, depression, bipolar disorder, OCD, anxiety. When I learned that and looked back on the five years from Ben’s first symptoms to his final diagnosis, I see why we were all so confused. It could have been anything. It could have been the pot he was smoking. It could have been his obsession with Siddhartha. It could have been hormones, and the emotional consequences of a father who was missing. But it wasn’t. It was paranoid schizophrenia, taking hold.

But if we had known earlier, treated it earlier - if one of the professionals had been able to see the truth – might we have saved a lot of heartache? Could we have avoided the psychotic breaks that may have caused brain cell loss?

We need more research. More definitive tests for mental illness would be on the wish list for sure. Meanwhile, signs and symptoms will have to do.