I am going to write about me, but I have to start earlier. Mental illness has a genetic component and mood and thought disorders tend to run in my family.
When I was 15, my 21 year old brother was away at college. He had a psychotic break, but we didn’t know what had happened. First, he stayed still and stared. Then when he started talking he said unusual things and was unpredictable. My father didn’t believe mental illness was real, and that my brother could just stop acting that way. My parents blamed it on a cult.
At the time he scared me. He acted strange. He said things that didn’t make sense. I wasn’t unkind but I do wish I could have got past my fear and tried to reach him somehow. I feel there is an unfairness that I have medications that work well for me and he didn’t have this opportunity.
The only treatment he got was when he was picked up for 72 hour observational holds by the police. He has passed away. He fell at a waterfall while still psychotic when he was 26. We are not sure if it was an accident, maybe poor judgement or suicide.
For as long as I can remember I have been anxious and shy. I also would cry easily. People would tell me I should talk with someone or that I have anger issues, but I thought it was their problem. I moved and changed jobs frequently. Later, I would just go to work, come home and stay indoors except when it was necessary to go out. If there were work meetings on my days off, I thought it was planned against me. Once, I burst into song at work about how much I hated my job. (Luckily, my boss was out of the room).
My anxiety continued to increase. I worked in a hospital and was panicking at work. That could have cost me the job, so I went on my own to see a psychiatrist. At that time, he diagnosed me with social anxiety. I was put on an ssri antidepressant that worked very well. But, I went off it when I got pregnant with my second child and never went back to a psychiatrist.
When my son had just turned 2, I had a psychotic break at work. I don’t remember how I got home. I was hearing voices, some yelling, mostly people I know who weren’t there. I was seeing things. My thoughts were out of control. I think it had been coming on over time, but even though I am married, have kids and was working no one noticed because I keep to myself and didn’t say what I was thinking. People can’t read my mind. They may have asked if I was feeling okay, but they had no idea how bad I was doing.
That night, my sister called. She is a nurse practitioner and we had grown up with my brother so she could tell right away that something was wrong. She talked to my husband and he got an emergency appointment to see a psychiatrist and took me the next day. I am really lucky he could see me that soon.
I saw the psychiatrist on my own even though I was barely speaking. He would write things down and circle important words. I needed to stop breastfeeding on the medications he was putting me on so he crossed that word out to make sure I understood. Then he put me on some medications and my husband took me home.
I wasn’t well. It can take time. My husband left me at home and went back to work. That didn’t sit well with my family, so my parents arranged to take me from Southern to Northern CA. I ended up running away from their car and getting hospitalized in a place that was like a holding cell.
They had rows of cots and would wheel out snacks and drinks. You were responsible for your own linens and to find the psychiatrist. I couldn’t do most of that. Eventually, I was hearing voices of people I know at night and wandering around trying to find them. At that point someone took me to the psychiatrist.
Eventually, I made it back to my home but I was still really fragile. I would cry easily and get overwhelmed. Things hadn’t been perfect, but to me it seemed like everything had been fine and then I lost my income, social life and identity all at once.
I felt like they were trying to tranquilize an elephant but I guess that is what it took to get the mania/psychosis under control. My first diagnosis was bipolar 1 but it has changed to schizoaffective disorder, bipolar type. A thought and mood disorder. It took months to get on a dose of medications where I wasn’t overly sedated but my symptoms were under control.
The thing that has helped me the most is meeting other people that I can share experiences with. I went to support groups and met people I could relate to. I go on the internet and meet people from all over the world. They may not describe my symptoms in the books, but I have met people with similar experiences.
I have had other episodes while on medication. You don’t need to go “off your meds” to have symptoms. Sometimes the meds just don’t work for you. But, this was how it started.
I am doing well now. I volunteer for the National Alliance on Mental Illness (NAMI) giving presentations on my experiences with mental illness and work as a peer mentor at a center for others with mental illness. Stress makes my symptoms worse and I don’t picture myself going back to working in a hospital. Fortunately, I enjoy what I am doing.
Lori is a peer mentor for the mental health association. She has schizoaffective disorder, bipolar type. She volunteers for the National Alliance on Mental Illness.