Pamela Trufyn experienced her first psychosis at a very young age with little to no understanding of what a schizo-affective disorder could even mean – all she knew was that she was scared and confused.
From 1996 to 2010, Trufyn experienced multiple diagnoses and symptoms ranging from depression to hallucinations to elated, anxious habits to a heavy – sometimes paralyzing – fear of causing people around her pain.
It wasn’t until 2010 that she was diagnosed with schizo-affective disorder and began to reap the benefits of a chemically balanced brain.
“Schizo means split – that doesn’t mean split personality. It means I’m split between positive and negative symptoms of psychosis,” explained Trufyn.
“The affective part of that means that I have a mood disorder. I come up and I’m pretty good but when I come down it’s like I’m crashing into a very deep depression.”
Schizophrenia is a brain disorder that is not completely understood much like many brain disorders. There are varying degrees, forms and factors that come into play with a diagnosis of schizophrenia (or related diagnoses). Symptoms are classified as being positive, negative or cognitive.
Positive symptoms are things can be seen or heard and can be described as something that a person without a disorder would not have. The most common example is auditory hallucination.
Negative symptoms are things that are lacking in a person with schizophrenia that would not be lacking from a healthy brain. An example is having no tone or facial expression while speaking.
A person can show signs of positive and negative or even cognitive symptoms, which give them a ‘split’ diagnosis, explained Trufyn.
“I didn’t realize I was sick. My parents saw me doing things that I wouldn’t normally do if I were well. Examples were that I wasn’t eating because I thought I’d have to pay for everything I ate. There were so many different things going on in my mind – like I’d have to pay for everything I consumed and I didn’t have that money, or that I was being prepared for a celebration. Things that you hear and wonder why would she believe that, she knows it’s not true,” said Trufyn.
“My mind gets full. I heard about the disaster in Haiti and thought it was my fault because I was evil. When I’m in a state of psychosis, I feel like anything bad in the world is my fault. My mind twists things that I hear, even as a child.”
Trufyn grew up battling bouts of severe depression and trying to carry herself through stages of psychosis.
She talked about being obsessed with religion and religious ‘signs’ and going off of her medication because she thought she was doing well. Trufyn said she make attempts at taking her own life before she was comfortable telling her doctor about some of the more major symptoms and thoughts she was having, which ultimately led to her successful diagnosis.
“From 1996 to 2014, there has been a lot that’s happened but I’ve realized I’m a person who lives with a diagnosis of schizo-affective disorder and experiences these things. I started at the society (Schizophrenia Society of Alberta) as a volunteer and people understood me. They saw things in me that I couldn’t see for myself – things that I was good at,” smiled Trufyn.
“I’m good at talking with people here and sharing in their lives. I was offered this position with peer support. Through talking to people in our groups, I saw that I shared experiences with (other people with similar diagnoses) too, and maybe this is an illness that other people experience too and it’s not a fault of my own.”
Trufyn said that the support from the Schizophrenia Society of Alberta helped give her a sense of direction, belonging and comfort through the programs and interactions of the people there.
Last year, she attended the Open Hearts and Minds Walk (presented by the Schizophrenia Society) for the first time. It will take place again this year on Sept. 13th at Mackenzie Trail.
The goal of the walk, Trufyn explained, is to get out and meet people who live with this diagnosis, and show some support for them in their struggles.
“It was very great to see all of the people that want to run for this cause and want to support us. Lots of people know about schizophrenia, either from the stigma or the facts. This walk is about the facts. It makes it real – these are real people that have an illness,” she said.
“There shouldn’t be that stigma anymore and people shouldn’t have to feel like they’re on their own. There are people that understand them and can help them. This walk also gets information to the families of people who are living with a diagnosis. It’s a great way to get out, have some fun, enjoy the fall and learn the facts about schizophrenia.”
Trufyn went through many years and a lot of struggling before she could get the peace and support that she now has in her life. She said that she is happy now and feels proud of the place that her life is in.
Information about the walk and about schizophrenia is available on the Schizophrenia Society’s web site. The walk is free and also includes a breakfast, a silent auction and more. For more information, call Judy at 403-342-5760.