Life with Schizoaffective Disorder – the Quiet Changes

There are quiet sides to the hardship of life with schizoaffective disorder. Though you still may not see the hallucinations, delusions, or what’s behind the mask of negative symptoms, if you take one step further, there is something more. When her red nails tapped together and the sounds of the letters S-C-H-I-Z-O escaped from between her teeth, I felt it curl up tight inside of my chest. It was my life changing forever.

Soft like a cat and black as the deepest shade of shame, it radiates unease, hesitancy, and distrust. Though hidden inside of me, I felt as though I wore it like a badge on my chest. On some level, I felt protected. I was no longer just some weird girl. I had a label. It just wasn’t one that I wanted. And despite that strange sense of security, I was entirely insecure, terrified of the judgement of others. Particularly because I felt that my idea of their disdain for me was justified.

Suddenly, I approached everything differently.

I had never considered myself a particularly confident person, but suddenly I didn’t feel like I was capable of anything. It didn’t stop my heart from sinking with every bad grade and social mistake, but I approached things thinking, how can I possibly do this? 

Questions met me at every turn. Sitting under a tree at lunch, I would watch my friends’ lips moving the conversation, but what was echoing in my head was, “why do they keep me around?” Approaching the door to the fair trade store I worked in, it was “what mistake am I going to make today?” And every morning, when my eyelids parted, my mind sparked to life and wondered, “what is going to happen today?” Every day, I undermined myself. I set myself up to fail, doubted my ability to do anything and be worthy of anything, and approached each day in fear of what schizoaffective disorder would bring.

But the effects of my new outlook on life went much deeper than cold, heavy shame and doubt.

Determined to keep up with my peers, I went to college the next fall. And I was not prepared. When my lack of study skills inevitably sent my grades into a nosedive, many things were spinning in my brain –  I can’t do this. Why am I here? You should be able to do this. What’s wrong with you? Don’t even bother trying. You should just give up. Why don’t you know what to do? 

The narrative began in first person, then began to shift until another me stepped out of my bones and stood before me, metaphorically speaking. She followed me everywhere, riding in my chest, wrapped up in that soft black thing. This other side of me would criticize, question, and make demands, often ones that I could not fulfill, like living a perfectly “normal” life like my peers who did not have disabilities. Nothing was ever good enough to make up for this disease that I had unconsciously deemed my downfall.

It didn’t stop with school.

At first, the other side of me firmly believed I needed a Ph.D. As though that would absolve me of my failures. But, while working in my chosen field, I quickly realized it was not right for me. From there, my idea of the right career bounced through the hallways of my head like a ball, ricocheting off of options in wildly. Retail! Event planning! Photography! Motivational speaker! For one reason or another, each fell and shattered on the floor.

I felt lost. In a day and age where people frequently define themselves by what they do, I was nothing but blank. No option seemed right, whether I tried it or not. Each time, I put my heart into it, only to be frought with anxiety and a complete inability to trust myself. Each time, I walked away feeling beaten down. But that dark soft thing in my chest continued to radiate the worry that I was nothing without a career path. And in my personal life, things were just as unsteady

My interactions with people often felt awkward and unwieldy. 

Interactions rarely felt easy or natural, often leaving me questioning what the other person thought of it and me. Did they think I was weird? Did they know there was something wrong with me? It made trusting people difficult, but when I did decide I could trust, I put my whole heart into the relationship, be it friends or boyfriends. Despite any of my own hesitations, I would back them in their endeavors and thoughts processes.

But when it came to those who approached me for help, throwing my heart into it included going a bit farther than just holding their hand. I would guide them, or perhaps the better word is drag them, desperate to help them avoid the feelings that I had lived with. I didn’t want anyone to have their own version of the glowing, black, life-changing feeling wrapped up in their chest. Unfortunately, coming on strong did not typically win me long-lasting friendships. And for those that did stand by me, there was always that thought circling my head, why do they stay?

I would love to say I have overcome these obstacles in leaps and bounds, but that’s just not the case.

Pills can chase some of my symptoms away. But removing that black thing from my chest and cutting ties with the part of me that is so full of demeaning questions must be done by hand. Initially, I thought it had to be done in one sweep, like ripping a bandaid off. But all I did was hurt myself. I would get upset with myself for not healing faster. I knew the logic. The worthlessness was in my head. My capabilities were not as limited as I told myself. And I didn’t have to approach everything like I was defusing a bomb. But, cat-like, that black thing dug it’s claws in.

Instead, I am working on shrinking it.  

I push at it slowly, cautiously, but firmly. Logic is compared in small pieces, and with repetition. I have more confidence that my boyfriend, who has gone to great lengths to be with me, does intend to stick around. Though I haven’t totally nailed down the whole career thing, I’m trying to give myself a break and remind myself that i am not running out of time. I am forming open and honest friendships. But that soft, black, life-change, though smaller, still remains.

I still struggle greatly with confidence and am extremely hesitant in most of my thoughts and actions, but there is improvement. What once expanded so much that it filled my chest to bursting, is now something I can hold in my cupped hands. This quiet struggle has been a battle out of earshot of others and that continues on. But I don’t need praise for this triumph. Living my life somewhat more freely is reward enough.

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