First-Person Experiences with Schizoaffective Disorder

"It always starts with the static. Like an old TV left on after the broadcast ends. The world gets a little bit fuzzier, and my thoughts start sliding out of my grip. The first time the voices really took hold, I was 22. I was convinced the overhead lights in my apartment were transmitting coded messages about me to the neighbors. I didn't sleep for three days. But the hardest part wasn't the voices; it was the absolute, crushing depression that hit the moment the psychosis broke. I woke up one morning, the voices were gone, but so was my will to move, to eat, to exist. That drop off the cliff is what makes this illness so hard to explain to people."

"For years, they told me it was just bipolar disorder. I took the mood stabilizers, but the paranoia never really faded. Even when my mood was perfectly neutral, I'd have these lingering delusions that my coworkers were conspiring to get me fired. Getting the schizoaffective diagnosis was weirdly relieving but also devastating. Relieving because it finally explained the constant low-level paranoia. Devastating because it felt heavier. 'Schizo' is a scary prefix. It took me a year of therapy to stop mourning the person I thought I was and start figuring out how to live as the person I actually am."

"Trying to find the right cocktail is like trying to tune an old radio with boxing gloves on. Zyprexa made me gain 40 pounds in a few months and left me sleeping 14 hours a day. Seroquel made me feel like a zombie. We finally landed on a mix of Abilify and Lamictal. It’s not perfect—I still get a slight tremor in my hands, and sometimes my mind feels a little blunted—but the trade-off is worth it. I haven't had a major hallucination in three years. I've held down a job. The meds dull the sharp edges of the world, but sometimes those edges are what cut you."

"Dating is a minefield. When do you drop the 'S' word? First date? Third date? I waited six months with Mark. When I finally told him, I brought literature. I was so prepared to defend my sanity. But he just listened. The hardest part of our relationship is the negative symptoms. When the avolition hits, and I can't even muster the energy to watch a movie with him, he sometimes takes it personally. I have to remind him: it's not that I don't love you, it's that the mechanism in my brain that processes 'wanting to do things' is temporarily offline."

"Recovery isn't a straight line. It's not like getting over a cold. Recovery for me looks like knowing my triggers. I know that if I get less than six hours of sleep for two nights in a row, the whispers start at the edge of my hearing. So, I guard my sleep like it's my full-time job. I take my meds every single day at 8 PM. It’s a regimented life, maybe a boring one to some people, but boredom is a luxury I worked very hard to earn."

"A mixed episode is the most dangerous place my brain can go. I have the energy and racing thoughts of mania, but the core emotion is pure, dark depression. During my last mixed state, I was pacing my room at 4 AM, vibrating with energy, while simultaneously feeling so worthless I wanted to die. Add in the auditory hallucinations telling me I was a failure, and it was a perfect storm. The only thing that got me through was my safety plan. I called my sister, she came over, and we just sat on the floor together until the antipsychotic my doctor told me to take kicked in."