In 2006, author Sarah Rae’s brother was diagnosed with schizophrenia. Now she shares the challenges of the journey that led up to his diagnosis – and what came next – in her new book, The Fog of Paranoia.
Here’s a quick Q&A with Sarah about the experience chronicled in her book.
CaringBridge: It’s clear from your writing that your older brother, Pat, was more than just your sibling. He was your friend. How did that relationship change when he got sick?
Sarah Rae: I had always turned to my brother whenever anything significant happened in my life. But when he became sick, I lost that. I’d call or text him and I’d never hear back. It was really difficult. He had a best-friend role in my life, and that was gone.
CB: What were some of the challenges of your caregiving role as he got sicker?
SR: I was the little sister who had looked to him for advice and answers. Those roles have reversed now – I feel like the big sister. But he still knows that I’m an ally for him. He makes appeals if he feels like his voice isn’t being heard. He knows that I understand him.
CB: You earned a master’s degree in psychology after Pat was diagnosed. What was it like to experience both the academic and actual versions of schizophrenia?
SR: When students talked about schizophrenia, it was very cold, very straightforward, and no holds barred. That may have been because they assumed no one had personal experience with it. It was very different than talking about something like depression or bipolarism, where students had to be sensitive to the fact that people in class might be affected by these illnesses.
CB: What do you wish you’d known at the beginning of your brother’s illness?
SR: I wish someone would have said, “You’re going to have to get comfortable with the fact that you could work on [his illness] forever, and he may never respond as well [to treatment] as others do.” It feels like a situation where you really have to go looking for satisfaction – find a way to “make” happiness and appreciate the little things.
You can read more about Sarah’s experience at her blog, Fog of Paranoia.
Please share this with other caregivers you know.
We’d also love to read your thoughts about Sarah’s experience with her brother, and hear about any similar stories in your life. Write a comment here.