There’s more to the story of schizoaffective disorder than I like to say
I didn’t realize I was avoiding it
Over the last two weeks, I’ve come to realize something – the farther from my last severe episode of schizoaffective disorder I get, the less detail I share about the symptoms. I speak about it now more than ever, but I tend to gloss over the symptoms and focus on stigma, treatment, and mostly overcoming things. Proof that people aren’t alone and that it’s possible to live a full life despite severe mental illness and all the trials and tribulations related to it. But that’s not really the whole story of schizoaffective disorder.
Not that that isn’t important
Not that it isn’t important to talk about the overcoming and not that it isn’t true, but it doesn’t really help you understand what it is truly like to live with a schizophrenia spectrum disorder, and, in order to break the stigma and educate people, that’s important too. The truth is, it’s terrifying. So much so that experiencing symptoms of depression sends me into an almost PTSD-like panic. Schizoaffective disorder is often episodic and follows a pattern, and I know what comes after depression. Psychosis.
I think the main reason I don’t talk about my symptoms more is because I don’t like to think about them. It was traumatic, even when the symptoms weren’t dark or threatening. I knew they were symptoms in all but one instance, but that didn’t really make me feel better. Having insight just made me more aware of the fact that I had no control over my mind and it could fire up waking nightmares at will.
When insights fails
The one time I didn’t realize it was a hallucination, it was an entirely benign experience. A man sat down near me at a Panera and started talking to me about my career goals. He brought up that I had my bachelors in psychology from Northwestern, but that I no longer worked in the field. It wasn’t threatening or scary, and I really only mumbled a couple of things and tried to ignore him because I wasn’t really interested in talking to a random stranger. But it wasn’t until much later that the doubt crept in and I realized he had literally no way of knowing any of that.
That scared me, not because the situation itself was frightening, but because I hadn’t known. I was also living alone at the time, meaning there was no one who could confirm whether or not things were real. And if I hadn’t known in that instance, how could I trust that I would know in other instances? How could I trust that I was outrunning schizoaffective disorder?
On your marks, set…
That was kind of what I was doing, without realizing it. I sprinted off the blocks the minute the word “schizophrenia” came out of my doctor’s mouth. I went to therapy and took my medication religiously, but in all other aspects of my life I refused to make accommodations. Like if I just pretended everything was okay, my life would go back to normal. But that’s not really how mental illness works.
On the occasions when I was forced to make an accommodation, like when I had to drop AP Calculus in high school because I was struggling with the my newly-crippled cognition, it was a huge blow to my pride and my opinion of myself. It took losing my full ride scholarship at Northwestern for me to finally admit that I couldn’t do things like I used to. At least academically.
The fear of being caught
In general, I’m more comfortable with the fact that this is what my life is like now, but a small part of me still fears schizoaffective disorder catching up with me. Like if I hold still, like setting aside time for any intensive recovery, the psychosis will come take me and I’ll be pulled away from every last chance at confidence in what is real and what is not. So I take my pills to maintain my stability and keep jogging even though I know that’s not at all how things work. Quite the opposite really; if I ever needed intensive treatment, I would be back on me feet much quicker if I took the time to focus primarily on recovery.
It’s much easier for me to focus on the overcoming. It’s important that people know you can overcome mental illness and that you’re not alone, and that message seems to help people. That’s the reason I write and speak about mental illness – I want to help people, and I want to make a difference. I’ve always been open and honest about my experiences, but I think in order to make the biggest difference, I’m going to need to face my fears and share my scars too. It’s time to tell the whole story of schizoaffective disorder. This is step one.
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