‘I Have A Mental Health Disorder That Causes Hallucinations And Paranoia—And Sharing My Story Has Given Me A Purpose’

Photo credit: Katie Sanford
Photo credit: Katie Sanford

From Women's Health

The summer of 2008, I was about to begin my senior year at a small public high school. I was one of the top students in my class, a highly competitive athlete, and a horseback rider. I also had a part-time job working at a local fair trade store. While I’d been living with depression and obsessive compulsive disorder (OCD) for many years by then, in early July, my depressive symptoms reached an entirely new level.

Suddenly, I couldn’t feel anything. Nothing mattered to me. I lost my appetite, had so much trouble sleeping I only slept around two hours a night, and became so apathetic and fatigued that it took a tremendous amount of effort just to get off of the couch to go to work or hang out with friends.

One day when I was yet again glued to the couch, my mom walked into the living room, and I knew I had to ask her for help. Soon after, I started seeing a therapist and a psychiatric nurse practitioner who prescribed me medication to treat my depression, anxiety, and insomnia. Unfortunately, though, my symptoms quickly went downhill.

In late July, I began hearing things, like the sound of someone snickering at me from the opposite corner of my bedroom and footsteps tapping down the hallway at night.

Over time, I started to hear sounds more and more frequently, including the single strum of a guitar and music coming from nowhere. Deep down, I knew these were symptoms I couldn’t ignore or explain away, but I was so overwhelmed with therapy, doctor’s visits, and trying to hold myself together that I couldn’t face them. I tried to just keep taking my medication and living normally.

But then, there was the cat.

I was pet-sitting for a family friend and trying to decompress by watching TV with their dogs. My arm was hanging over the couch when I felt a cat sniff my hand. Without looking over, I reached out to pet her. I felt her back away then come to sniff my hand again, and we went back and forth a couple of times like that before I remembered—they didn’t have a cat.

While a part of me felt comforted by her presence, the other part panicked and called my doctor. Later that week, I crawled under a desk at my house to turn off a power strip, and there she was again: a fluffy gray cat with pale eyes blinking slowly at me.

Photo credit: Courtesy
Photo credit: Courtesy

At my next appointment with my psychiatrist, on August 5, 2008, she started to discuss a different potential diagnosis.

When my mom and I sat down, my psychiatrist talked about “it” and how to approach “it” and possible ways to treat “it.” Of course, we had to ask: “What is it?” And she said, “It’s looking to be schizophrenia.”

As my symptoms continued to develop, my doctor ultimately diagnosed me with schizoaffective disorder, a mental illness that affects around 0.3 percent of the population, according to the National Alliance on Mental Illness (NAMI).

The simplest way to describe schizoaffective disorder is that it’s a combination of schizophrenia and a mood disorder. The “schizo” side of this disorder causes symptoms like hallucinations, delusions, paranoia, and disorganized thinking and speech, while the “affective” comes with shifts in mood you’d get with bipolar disorder or, in my case, depression.

Photo credit: Courtesy
Photo credit: Courtesy

Part of me felt relieved to know there was a legitimate reason for my experiences, and that I had treatment options. But I also panicked about the future.

I panicked about the stigma, what symptoms were to come, and what my life would look like from now on.

After my diagnosis, I continued seeing my therapist and began taking new medication, but other symptoms began to kick in. For one, I started to make weird associations between things that weren’t connected in reality. One day, when I was hosing off my horse after a jumping lesson, I noticed some white stuff on her hoof. My immediate response was, “Oh, that’s where the price tag was,” like when you peel a barcode sticker off of something and it leaves a sticky paper residue behind. It wasn’t until I was in the car on the way home that I realized that made no sense—it was just white paint from a jump we nicked.

I also had more visual hallucinations. I saw people peering into my bedroom windows and around doors. I began hearing the footsteps every night. One day at the small fair trade store where I worked, I was cleaning shelves when these little fluffy alpaca figurines started talking to me (or so I thought), and I felt as if they were my friends. Because they were so comforting to me, I bought one and would carry it with me in my pocket as a kind of safety blanket as everything around me was spinning out of control.

While the delusions and hallucinations were impossible to ignore, I also had a hard time thinking clearly and focusing on schoolwork.

Academics had always come easily to me, but my senior year, I went from getting A-pluses with very little effort to grinding out Bs after several hours and days of struggle. When I sat down to work on an essay which usually flowed right now, I felt like I couldn’t control my thoughts. They flew around my head as if someone had thrown a deck of cards in the air, and I was fumbling to catch hold of just one.

Other times, my thoughts would slowly shift like the squares of Rubik’s cube. Sometimes it was as if I was thinking of everything all at once. That year, I had to drop my AP calculus course because no matter what I did—flashcards, study groups, studying harder—I couldn’t memorize all of the formulas I needed to know in order to get a decent grade. My downward slide in school was a huge blow to my pride and self-confidence.

While I’d been able to relate to friends about symptoms of depression I had growing up, now, I didn’t know how to explain to them what I was hearing, seeing, feeling, or thinking. For the most part, I tried to keep my diagnosis to myself. In truth, I was so ashamed I felt like I couldn’t tell anyone, and at that point, I was afraid I wasn’t going to get better.

It wasn’t until after I graduated high school and went to Northwestern University in Chicago that I began to open up about my diagnosis.

When you’re living with a mental illness, having a good doctor is important, but having supportive friends is really important. When I began telling my new friends that I was living with schizoaffective disorder, I started to realize that people weren’t afraid of me and didn’t think poorly of me, either. Many of them also had no idea that someone like me could make it to college. It became fun for me to get to know someone for a while, casually drop my diagnosis into the conversation, and watch their whole thought process change.

Photo credit: Courtesy
Photo credit: Courtesy

My sophomore year, I became involved with my university’s chapter of Active Minds, a nonprofit organization that aims to increase mental health awareness in students, and joined a panel to speak publicly about schizoaffective disorder. Afterwards, I was shocked by how many people came up to thank me, tell me I was brave, and that I’d changed their view of schizophrenia and schizoaffective disorder.

This was my turning point: I realized that I could do more than just educate my friends and have fun breaking the stigma—I could also make a difference by sharing my story.

Over the next few years, I took my mental health advocacy efforts even further.

I went on to become co-president of NU Active Minds and, in 2018, I connected with the NAMI chapter in Chicago, where I trained to become an advocate and crisis intervention training panelist. In February 2020, I launched my blog, Not Like the Others, where I use my story, education, and research to educate people, make others feel less alone, eradicate stigma, and, most importantly, give people a better understanding of what it’s like to live with schizoaffective disorder.

These days, I work as a legal assistant in a suburb outside Chicago and live with my boyfriend, a cat, and my service dog (a 136-pound, 5-year-old Newfoundland named Moose!). To manage my symptoms, I take several medications in the morning and at night and go to therapy once a week. I still experience disorganized thoughts and cognitive issues on a daily basis, but my hallucinations and paranoia only pop up rarely. When they do, my psychiatrist and I work on understanding why they’re happening and how we can address the root cause.

Photo credit: Courtesy
Photo credit: Courtesy

Schizoaffective disorder has taught me that I have strength I didn’t even know was possible.

I understand that this disease is not static—it can grow and change with me, and all it takes is one life event, change in medication, or stressful situation to threaten my stability. Nothing is guaranteed when you’re living with a mental illness like mine. For this reason, I’m grateful for so many things that I once took for granted like the support of my friends and family, a job that I like, and the ability to function in everyday life.

Photo credit: Courtesy
Photo credit: Courtesy

While I’m still working on it, I’ve also learned a lot about the power of self-acceptance. I want readers to understand that while schizoaffective disorder is a serious illness, a diagnosis is not the end of your life. There really is hope, and you can live a fulfilling life. I honestly can’t imagine my life without schizoaffective disorder anymore, and I’m okay with that. It’s given me a purpose: to help others.

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