I live with Schizoaffective disorder and after years of trying to hide it I’m coming out with a story to tell. At the age of 20 I began having symptoms. I was in college studying psychology when things started to become…different. I starting seeing things and had periods of time where I had a lot of energy and an unusual zest for life.
I happened to be taking an abnormal psych class and material seemed familiar, as if the author was writing about my experiences. To me I seemed fine, certainly not “abnormal”. I reflected and I was able to do more art, easily made As, involved in research projects, and publishing, I felt great. Something was off but no one noticed initially, not even I.
Some time passed and I began connecting ideas that had no connection. For example, I thought if I saw a feather that a spirit was guiding me to make “choices” which would lead to enlightenment. Next, I started to become paranoid and it was very hard to leave the apartment to go to class. I started seeing beings, I was in the grocery store parking lot and people began transforming from the waist up into demons who were yelling profanity at me. I was very afraid and isolated again. During periods of isolation I managed to maintain my grades and perform my activities, so no one noticed. A couple weeks would pass and I was able to join my activities again with some ease. I slid under the radar. This pattern continued for me all throughout school.
The next period occurred when I was trying to finish my Ph.D. program. I was gathering data and drafting chapters, finishing up interviews, and as I became engrossed in the work I began believing that government was going to be overtaken by a group of politicians. My professor and mentor entertained my ideas, there was some fluidity so he didn’t think anything of it, but I was about to spiral.
I isolated and spent hours at home researching my ideas, making illogical connections, and writing without sleeping for days. I started seeing dark figures in my house and I was convinced they were spies. I started having gran mal seizures due to exhaustion. I spent days in the hospital as everyone was trying to figure it out. No one asked me about paranoia or seeing things and I didn’t realize I needed to tell them. To me it was all real. Unfortunately, I didn’t not get screened. They found I had a seizure disorder and treated that instead.
In early adulthood, after a significant loss I experienced another episode. I had isolated and believed there were rats on the top floor of the house. I could hear them come down a d scratch my bedroom door each night. I bought traps and had friends convinced they heard them too. Somehow they went from rats to demons trying to get me. Not long after I started hearing persecutory voices and seeing beings that where not really present.
One morning at 2am the voices commanded that I go to to lake. It was below 20 degrees, and I got in my car and drive several miles to the lake. I got out walked to the edge of the lake and sat on a slab of ice because I was told to meditate until the higher consciousness was downloaded. Once the download happened I would be responsible to save humanity. Luckily a fisherman happened to be out and returned me to my car.
I was lucky to find a good doctor, that asked all the right questions, and the timing was right. I lost everything with that episode, financially, relationally, professionally because I simply could not function. I hit my rock bottom.
My recovery included many therapies. I may be the most well adjusted human in the room now. ☺️. My recovery did not just come from a pill bottle, it came from a community. I learned a lot of skills and wouldn’t change my experience if that were possible. I have a lot of grit because of this illness.
- Relaxation and Body Work
- Assertiveness Training
- Cognitive Behavioral Therapy
- Self Monitoring Symptoms
- Social Skill Groups
- Groups for emotional regulation, executive functioning skills
- Groups for social connection skills
- Religious groups
- Practicing Zen
- My own interventions!
It was not an easy journey, and I did a lot of hard work. It has taken me 25 years to feel “put together” and I’m honestly living a great life. I finally have the right mix of medication, I learned a lot of important life skills and I put everything I learned into a daily practice. I didn’t do the work to “put things back together”, I did the work to create something new.
I have lost, and some of it was good looking back, but in the moment it was devastating. Things I lost;
- A job
- My independence
- My dignity
- Living a life without constraints
- Freedom to do whatever I wanted whenever I wanted to do it
I spent a good amount of time angry, sad and feeling hopeless. I learned how to make space for those feelings and grow. I have grieved my prior life, I have given up a lot. It was a painful process, but I can look back and be grateful for every moment.
I was in a bad place and I walked into a therapist door thinking it was a waste of my time. I had a horrific episode, I had to resign from a job, I couldn’t pay bills and had to move. I didn’t work for 3 years, lost my independence and felt worthless. My therapist asked me, when you interview how are you going to present yourself. I was speechless.
I couldn’t think of one thing, so I just sat there. He smiled and said, “Stephanie, you just survived a horrible situation, you have grit.” He sent me home with an assignment to write my response. What qualities did I gain from surviving my illness. Well I included “grit”. This is what I came up with;
- Authentic friends
- Communication/Listening skills
I practiced “seeing” myself from a new perspective. I got a job with one interview and I’m eternally grateful. Recovery is tough, it’s possible and the growing pain is worth it. If you’re going to make it you have to learn about the illness, learn about the skills you need to be healthy, commit 100%, have grit and show up each day ready to work. I truly believe anything is possible and if you believe in yourself to can create opportunities to grow each day.