The World I Live in as Someone With Schizoaffective Disorder

I remember playing with my toys as a child, imagining my action figures going on extraordinary adventures, and recording my thoughts onto old tapes in a stereo I had. One day, I turned around and saw a large, shadowy figure in my doorway. He was massive, much larger than anyone I knew, broad shouldered, but with completely indistinct features. He was, for the most part, pitch black. 

He stared at me for a time, turned and walked into my parents’ room, never to be seen again.

At the time, I didn’t realize the man wasn’t there. I figured he was just as real as any other adult I knew. I figured he was a friend.

Another time, they weren’t as indifferent. I was 12 and familiar with my hallucinations, generally knowing what was real and what wasn’t. This particular night was unusual. I awoke, went to drink a glass of water and walked back toward my room. I stopped dead in my tracks. My room was red and four cloaked figures floated above my bed with fire circling around them. Inside of the cloaks was a black abyss and I knew they had come for me. As long as I stayed out of my room they wouldn’t see me. I stared at them for what seemed like an hour before they went away. I slept on the couch that night.

I’ve seen “shadow people” intermittently throughout my life. More often than not they’re not malevolent. They’re usually just there and have no real significance.

They essentially left my life since I finished puberty and got antipsychotic medications. Now my most usual hallucinations are bugs crawling along the walls and the floor. Some days, I hear voices. They don’t say anything of particular importance, but I can tell they’re not there because of a feeling I have in my head.

When I’m particularly stressed, that feeling isn’t there and I can feel the voice’s vibration against my ear, as if it’s whispering next to me. Sometimes I’ll hear footsteps or coughing in my apartment for days on end. Eventually, I have to walk around the apartment with a baseball bat and search in every closet, under my bed and in the cabinets. I always hope this will alleviate my fears, but it never does.

Because of the world I live in, I wonder if many of the things I experience daily are what others do or if they’re exclusive to me.

But the hallucinations aren’t the most difficult or alienating part of my life.

The aspects of my illness that affect my life the most are the constant shifts in mood, how I appear to the rest of the world and the knowledge that my entire life will have to be carefully managed with skills and medications.

The last time I had a manic episode was in March of 2014. I ate healthy, worked out for several hours per day, had a clean apartment and was generally productive. Unfortunately, this didn’t last long and by May I reverted back to being depressed. I stopped working out because I was too exhausted but was simultaneously unable to sleep due to constant rumination; I also abandoned the projects, cleanliness and hygiene I had been so careful to maintain during my manic phase.

Depression, contrary to popular belief, isn’t simply sadness; it’s physical exhaustion. It’s dragging a corpse through your life. It’s the inability to care about or enjoy most parts of your life, even the things you used to like. And if you find yourself enjoying something, it’s usually somewhat separated from you, like seeing a loved one through prison glass. It’s there, but not as you hoped it would be.  

Unfortunately, my mania often comes with its own anhedonia, or inability to enjoy things fully. That’s why, when I do find something I feel fully connected to, I become incredibly invested in it for days, weeks, months or years at a time.

Schizoaffective disorder is also marked by some social awkwardness, so meeting new people, even in familiar environments, is often like being dropped into a culture where you’re unfamiliar with the customs. But my anhedonia generally extends to people as well, making the unfamiliar culture mostly uninteresting to me.

But, just like when I experience an event or activity I truly enjoy, when I find someone who I am enthralled with, I fixate. Since it’s so rare for me to be fascinated or truly interested, I don’t know how to control the emotions. I pick apart why they’re special to me. My adoration and attachment has been described as “intense” even though I mean no harm. 

Another day-to-day challenge comes from the “affect” part of “schizoaffective.” I naturally sound and appear flat, aloof and uncaring. Because of this there are many people who feel I am insincere or cold to them, even if I care deeply or am completely engrossed in what they have to say. At every job I’ve had I’ve been told to “look more excited.” And simple things, like smiling for pictures, are extremely difficult. Forcing those smiles requires all of my concentration, is complicated and feels disgustingly dishonest to me. 

Other mental conditions and personality flaws exacerbate my condition, yet I soldier on, knowing some days will be better than others.

The Mighty is asking the following: For someone who doesn’t understand what it’s like to have your mental illness, describe what it’s like to be in your head for a day. If you’d like to participate, please send a blog post to mentalhealth@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.