"I slept with the lights on and with a bible at my side to keep the demons away."
Stephanie Kaczmarek, 21
Desk Staffer, Student
Child-onset Schizoaffective Disorder (diagnosed 2012)
Schizoaffective disorder, like most illnesses that begin with the word “schizo”, is terribly misunderstood and quite difficult to diagnose. I myself have come to understand it in the most basic way as mild Schizophrenia combined with a major mood disorder (examples of a mood disorder include bipolar disorder, major depression, etc) which happens to be Seasonal Affective Disorder. Child-onset essentially means that my symptoms began to appear in childhood and that it this is an illness I was born with, not one I developed later in life. Though unfortunately for me and others in my position, major mental illnesses such as this are not allowed to be properly diagnosed by a psychologist until after the age of eighteen. Symptoms of this disorder usually include: hallucinations, delusions, disorganized thinking, depression, confusion, difficulty concentrating, and social isolation. All of which have made appearances at various points in my life.
As said before, my symptoms began from a very young age and so far the earliest I and my parents have been able to pinpoint the first one occurred around the age of three when I began to experience severe paranoia. This first symptom was chalked up to an overactive imagination that most children experience at that stage in life and brushed aside. Over the years this symptom began to evolve into delusions about being watched at night and being killed or dying, often at the hands of family members or demons I could not see. My first hallucination occurred at age ten or eleven when I told my parents that I saw a person walking around our home who was not there. Not too long after this experience, I was home alone and had my first panic attack brought on by a particularly strong delusion where I believed there was a person in my house trying to kill me.
From then on, the panic attacks increased in both intensity and frequency while the delusions grew terrifyingly powerful, however I started to develop my own little ways to manage it. I recognized triggering words, I slept with the lights on and with a bible at my side to keep the demons away. Unfortunately, not long after this brief period of relief, emotional problems began to arise and those quickly became something I had no control over whatsoever. From the months of December to March I became lethargic, immobile, and often downright nasty to be around. I slept for the majority of the day, I had no appetite, and sometimes even finding the energy to shower or get dressed became difficult. My grades plummeted significantly and I had no way of predicting emotional outbursts. Then as the weather warmed up and the sun returned, everything would seemingly return to normal with the exception of the panic attacks, hallucinations, and delusions.
By the time I reached Sophomore year of high school and until my Freshman year of college at UMBC, the delusions, hallucinations, and emotional confusion became so intense that they started to completely overwhelm me. I was disoriented all the time, I heard footsteps, I occasionally heard voices or saw people that weren’t actually there, and I believed the demons and my family wanted to kill me. Nothing felt real anymore, it was all a nightmare and I could not wake up. This translated into mental breakdowns, crying and throwing things at night, screaming, and of course, panic attacks that crippled me. I damaged relationships with friends and family due to my own paranoia and emotional turmoil, often I would purposely isolate myself from others because it was easier to handle my problems on my own than explain them.
I was finally diagnosed in January of my Freshman year at UMBC after experiencing a two week period where I believed my cats were possessed and trying to kill me. At eighteen years old, I had just realized that something definitely wasn’t right in my head and that I needed help to figure out what was wrong. My current psychologist diagnosed me with Schizoaffective Disorder after extensive testing and finally making me face the symptoms I had brushed aside or ignored for so many years, having believed they were normal.
The most emotional and challenging part of the entire process had to be finding out that this is not an illness that will ever fully go away with enough medication and therapy, it’s something I will carry with me and battle for the rest of my life. Not only that, but now being able to actually recognize the symptoms and no longer having the security of ignorance to shelter me from them made me realize how prevalent and frequent they truly were in my life. Thankfully, I have had an amazing support system of family, friends, and a fiancé who stood by me through all of it and are equally as glad to finally receive an explanation for my bizarre behavior.
Since the diagnosis, a lot has changed in my personal relationships and my parents find that they can better relate to my thoughts and behavior now that they have a foundation of mental illness to relate to. My fiancé has done his own extensive research on Schizoaffective Disorder and the symptoms of panic attacks so that he better knows how to talk me down from a delusion or extreme episode to bring me back to reality. It’s a relief to know that I am not alone in this fight and no matter how terrible I behaved in the past, I still have people who are willing to stand by my side and help me to cope.
Post-diagnosis I made changes in myself as well, after a year and a half of therapy I decided that the symptoms of my illness could not be managed through psychological intervention alone and began using anti-psychotic and anti-depression medication to help manage (though after a bad reaction I have only stuck with the anti-depression meds). Almost one year ago in May of 2014, I finally decided that I would publicly speak about my mental illness at a panel on campus during Mental Health Week and it was a life changing experience. I was terrified to share, worried about judgment or simply being unable to actually get the words out without breaking down in tears. Instead, I surprised myself by being able to speak, not only candidly, but with humor about my story and since then I have continued speaking at conferences, panels, and other venues about mental illness.
For those considering the idea of sharing their story, or just the idea of speaking about their own diagnosis to friends or family, know that you are not alone. You are an incredible person regardless of your illness and there are so many people out there going through the same, or similar struggle who are willing to empathize with and support you. I truly believe simply opening up and sharing my story has had a great deal to do with helping me realize that as it brought me confidence and so many friends who understood my struggle. I have come to understand that Schizoaffective Disorder does not define me as a person, rather it provides me with an experience and the strength to help others realize that mental illness is nothing to be ashamed of and there are so many other people who are willing to support us. We just have to be willing to take that first step and open up.
