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Using the Power of Story to Improve Patient-Centred Care
"She made me feel safe, heard and for the first time in a while, not completely crazy."I am a schizophrenic. Those words are unbelievably hard for me to write, even today when mental health issues are far less stigmatized than they were even 10 years ago. I was diagnosed in my 20's, about 25 years ago now, and it was scary. I honestly thought that my working life was over and that no one would want to have the “crazy” person as a friend. I also work in a male-dominated field (yes this is true even in 2017) and as any woman who works in a male dominated field can tell you, it's not easy on a good day. Add to it a pretty serious diagnosis and there are still times I'm worried my illness will be used against me. I know I can't help what I am. I also know that with the help of medications I am stable. It doesn't matter though, having a serious mental health problem is hard. It's stressful and the reality of what is wrong with me is part of my reality every single day.
I am a person who will always need a team of health providers on their side because of my illness. I rely on many-from psychiatrists, physicians, nutritionists and of course mental health nurses. My story today is about my diagnosis and how it was a nurse that led me to a proper diagnosis.
In my 20's I had a lot going on. There was school, relationships, starting a new career, all the typical stuff that 20 somethings deal with. I never had a 'name' for the way I handled stress. I had friends talk about their anxiety and worries but there was a part of me that felt that I had something different going on. It wasn't just anxiety, it was a persistent fear that I was being made fun of or talked about. I simply knew that I was being judged and mocked. I've come to learn that this is delusional behaviour but at that point in my life I couldn't name it, I just knew it was extreme and that this fear of being mocked or made fun of was starting to consume my life and causing me to view those in it with suspicion. I also found myself getting very agitated at situations and people that while someone else may find frustrating or ridiculous, I was overly worked up about. I saw doctors, went to clinics, and talked to therapists. 'You're stressed, anxiety disorder, a bit OCD'. I heard it all. Yet my fear of being mocked and my sense of agitation at the outside world persisted. So I did what a lot of us high-functioning mentally ill sorts do, I hid things from people. I lied about why I couldn't go out and why I didn't want to see my friends.
I grew increasingly isolated and fearful. My job that I love so much was being put in jeopardy. My behaviour was no longer going unnoticed.
More and more doctors and yet very few really listened to me. It came to head one terrible day when I had a psychotic break. The delusions were strong and I was not able to hold anything together. I was taken to hospital for fear I would harm myself. There were nurses, psychiatrists and physicians, but what saved me was one nurse who asked me about my history, talked to me about the impact of previous treatments and who listened without judgement when I explained my feelings of being mocked. She seemed to get that it wasn't just social anxiety but rather a persistent and clear sense I had that people were always making fun of me behind my back. She encouraged me to dig deeper, to seek out more people who could help me diagnose what was going on. She told the psychiatrists and physicians what she thought and she told me flat out that she thought I was not being properly diagnosed and that I needed to seek out someone who could get to the root of the problem. She made me feel safe, heard and for the first time in a while, not completely crazy. She also served as the impetus for a referral to psychiatrist specializing in patients with schizophrenia. I remember her face and I remember how she made me feel. But I'm ashamed to say I don't remember the name of this nurse, because without her, I'm not sure where I'd be today.