My disease is woven into my life, a mental illness that I have had long before I was even aware of it. I have Schizoaffective Disorder.
Throughout high school I struggled with depression, suicidal ideation, self injury and an eating disorder that grew progressively worse with time. Later in high school and early college I began to hear things. It was as if someone was whispering in the walls, and sometimes turning on static in my room, or releasing a gentle hive of bees that would not quiet down. I could not focus or concentrate. Eventually these sound turned into audible voices, telling me to do strange things, voices giving me commands.
Sometimes I would think a radio was on in the hallway outside my room, or that the television was on. I would go to turn the sound off, only to find there was nothing there. I would see people or things that were not there, having visual hallucinations that would terrify me. During this time I also began to believe that I was capable of time travel.
All of these things I kept to myself, for fear of being called crazy, thinking it would all go away, or perhaps it was simply that I was stressed out from school. Deep down however, I knew something was wrong. I stayed in my room away from my family, isolating myself out of shame, terror and confusion.
I moved away after my first year of college, and in my early twenties I had a period of about six months where I felt stable. Something in me shifted after that however, and suddenly I wasn’t. Things began to unravel. I didn’t realize how sick I was until a manic episode one night found me smashing things in my apartment, and I made a suicide attempt.
I was admitted to the first of many stays in a psychiatric hospital, and it wasn’t until then that I was told that I was at immediate risk for cardiac arrest from my eating disorder and would die if my life style didn’t change. During times of depression and mania I’d been reckless with drug use and alcohol, and I realized that I was headed toward my grave. I knew the doctors were right, I had to make some changes. This period of time also brought with it the news my primary Psychiatrist gave me, when he diagnosed me with Bipolar 1, PTSD, Panic Disorder, and an Eating Disorder.
Another year went by as I cycled through mood swings, psychosis, periods of time where I would become delusional. I would wait outside for aliens to retrieve messages I had left for them in my mailbox, wander the neighborhood in my socks and bathrobe, and then have weeks in between of complete stability. Sometimes I would experience all of these disrupting symptoms at once, and sometimes individually. After my initial multiple diagnoses with everything, my doctor finally sat me down one day and told me that after observing me for so long, it was apparent to him that I had Schizoaffective disorder.
This news terrified me.
I knew people who had anxiety, who had Bipolar disorder, and I felt that those illnesses were more common. It was easier to admit to saying “I struggle with depression” to a close friend, maybe, or find common ground with a person who also struggled with anxiety. But how could I ever talk about this? I barely knew what this disease even was. All I knew was that I had some kind of combination of Bipolar disorder 1 and Schizophrenia, and my mind swirled trying to put that together.
After years of medications, therapy, labels stamped on me like a postage parcel, I felt as though my face had been scribbled out and I had no identity left at all, I was just a bunch of marks and scars, the words of my disease. I felt that I had no hope.
That day I drove home from my doctors appointment, and I remember the tears burning my face, my skin, the shame ripping through my body as I wondered what chance I had to make it in this world. I tried researching what I could on this illness, but found little information.
That’s when I made a choice. I would share my own information about this illness through my own experiences, to shatter the stigma as best I could and offer hope to those who felt they had no voice. If all I could do was speak, then I would, even if all I could do was write. I now have a blog about my experiences, sharing my story, telling my truth to anyone who wants to listen, who needs to hear it.
Some time after this, I was asked to speak at a Mental Health conference called “Shattering Stigma with Stories” in front of about 300 people, and even though I was terrified, for the first time in my life, I used my vocal chords to share my story. I looked strangers in the eye, and said: “I have schizoaffective disorder, but that is not who I am. My name is Kelcey, that is who I am. I am not my disease.”
I don’t know what my future holds, but I see my life as beautiful. I am blessed. What I once saw as a curse, I now see as a gift. That is because my illness has allowed me to connect more deeply with so many beautiful people on a much more intimate level. I would not trade that for anything. I have spoken at another conference since the first one, and my goal is to continue to shatter the stigma that so many people face when shrouded by the cloud mental illness casts over lives, over loved ones, and to let people know they are not alone. More importantly, above all, I want people to know that there is hope.