A sister’s perspective on stigma and schizophrenia
Reprinted from "Recovery: Stigma and Inclusion" issue of Visions Journal, 2017, 13 (1), p. 20
I grew up with a beautiful younger sister who was my good friend, an honour student in high school and an accomplished pianist. But on an unforgettable day in 1977, she intentionally rolled her car on the Trans-Canada Highway. The accident left her badly scarred and unable to walk for several months.
In retrospect, I believe the car accident may have been the first indicator of mental illness. In the years that followed, our family tried unsuccessfully to help Sue* as she struggled with alcoholism, joined a cult, became anorexic, abused drugs and made other suicide attempts. As a teenager, she ran away from home more than once. As an adult, she was never able to hold down a job for more than a few months.
At every stage, family members have proposed theories: It’s teenage angst. It’s because she’s pregnant. It’s because she has a challenging marriage. Much later, someone even suggested it was because of menopause.
One night many years ago, when her two children were still young, Sue told me she heard threatening voices in her head. At the time, I dismissed her comments as a holdover from her cult experiences. Later, I did some research and began to suspect she might have schizophrenia. When I shared my suspicions with family members, no one was willing to consider the possibility. My parents particularly refused to talk any further about it.
In hindsight, I believe the negative public perception of mental illness had an effect on how willing my family was to consider the possibility that Sue was truly ill. That stigma nearly divided our family. We couldn’t be a family who had a member with a mental illness.
It would be a very long time before Sue was finally diagnosed with schizophrenia—more than three decades after that fateful car accident. If my 18-year-old niece hadn’t called 911, Sue may never have been diagnosed at all. In fact, we might never have known where she and my niece and nephew were living.
This was because, in 2007, Sue had announced to our family that she would no longer be having any contact with us because of the abuse she had suffered as a child. We were stunned. We all knew her accusations were false. My parents had always provided a stable, loving home for us.
For the next six years, we had no idea where Sue or the children were. She kept them hidden not only from us but from their father as well.
Then, on August 1, 2013, we got two phone calls from two different hospitals in the Fraser Health system. My niece had called 911 because she was experiencing thoughts of suicide. After she spoke to medical staff, there was enough concern about the welfare of my sister and nephew that they were picked up by Car 67 and taken to Royal Columbian Hospital (RCH).1 My nephew was sent home, but my sister was admitted.
We now know that many of the circumstances in the previous six years, including the break-up of Sue’s marriage, were brought on by Sue’s symptoms of delusion. When we went to the hospital to see my niece—for the first time since she was 12—she said that when Sue first insisted they disappear, it had been exciting to think they were on the run. But over time she had begun to think that either she must be crazy or her mother was.
Sue believed the neighbours in the next-door apartment were plotting to kill them. The three had “escaped” through their third-storey window, lowering themselves on sheets tied to the bed. Then they had lived on the streets of downtown Vancouver for a week without food. They had killed the family’s pet cockatiels before leaving the apartment because Sue believed the world was ending and they had to protect the birds from later suffering.
When the three found housing again, Sue began to suspect that a nearby cell tower was tracking the electronic chip she believed had been put in her eye after the car accident. She pulled both children out of school and moved again. When we found them, my niece and nephew had only an elementary-school education.
The most gut-wrenching question my niece asked us was, “Why didn’t you help me sooner?” We assured her that every attempt to find them had yielded nothing. This was hard to explain to her.
I experienced first-hand Sue’s other symptoms—and the equally distressing signs of stigma—when I went to RCH to see her.
On the other side of those elevator doors, I entered a scene from One Flew over the Cuckoo’s Nest. There were doctors, nurses and patients everywhere. None of the nurses made eye contact with me. It was complete and utter chaos. I finally got someone’s attention and explained who I was.
At first, Sue refused to open her door. I said, “I don’t understand why I can’t talk to you … I have come all the way from Alberta just to see you.” Through the door Sue said, “You say that as if you think I am crazy.” There was that stigma again, hanging in the air between us.
Once she opened the door, I gasped—she looked like a wraith: lost and bewildered. The glimpse I got of her room sickened me. The walls were made of cement blocks and painted an anaemic yellow. The tiny bed looked like it had come from a hospital demolition sale. Later, I wrote in my journal, “she is my sister, not a prisoner!”
The next time I went to visit Sue, a staff member escorted me to a messy waiting area where the TV was blaring. When Sue eventually showed up, she quickly switched off the TV. She said the hospital staff and volunteers spoke to her as if she were a child, insisting she participate in activities that held no interest for her. In hindsight, I can’t help but wonder if the residents of the psych ward are treated differently from the residents in other wards of the hospital—as if they don’t require a pleasant space, as if they don’t require the sort of respect that other patients receive.
At this point, we still didn’t know much about Sue’s treatment. Because Sue is an adult, no one would tell us her diagnosis, and we had to formally request to be involved in the continuity of her care—a request that was refused by Sue. Apparently, she’d informed her doctors that everything we told the medical team about her early life was a lie.
I cannot express strongly enough my distress at this dysfunctional system: when a loved one is suffering, a strong, caring family should be involved in the ongoing care plan. My journal entry at the time captures my despair: “Who on earth do they think wants to help Sue once she leaves [the hospital] if not us?”
The one saving grace in the whole process was discovering the BC Schizophrenia Society (BCSS). BCSS provided emotional support and counselled us on how to navigate the complexities of the mental health system. The organization has continued to act as a guide and resource throughout Sue’s recovery.
On August 23, Sue was discharged from the hospital. She returned to the apartment that she shared with her children, promising to come back for her medication on a regular basis. I do not know if she kept this promise, but she did slowly begin to re-establish contact with the rest of the family. It was at this point that I moved to the Fraser Valley from Alberta, thinking that Sue could live with me. She refused, but my niece took me up on the offer and lived with me for several months.
Life for our family is certainly much better than it was. Sue is now speaking with all of us again. She seems to enjoy spending time with us. We have shared laughter and happy memories together.
In July of 2016, our parents set up a living trust for Sue so that she receives on a monthly basis the money they had set aside for her to inherit. She has gained weight and looks much healthier. At one point, she assured us that she was still taking medication, but I don’t think that’s true any longer. Perhaps the reduction of stress in her life and the reconnection with friends and family have been factors in her recovery. She no longer has the pressure of having to provide for herself and her children.
My niece is now in her second year at the University of the Fraser Valley and my nephew was able to complete his high school education. But they have little contact with the family and only sporadic contact with Sue.
I am not proud to say it, but over the years, I have often been angry with Sue, for how I felt she was harming her children, hurting her husband and our family. I have also gone through a lot of self-recrimination: If only I had been more tolerant. What would have happened if I’d given her more support? And after Sue’s diagnosis, every time I had an unusual idea or heard a voice in my head, I would have the unwelcome thought, What if I am affected, too?
While I lived in the Fraser Valley, I continued to be involved with BCSS support groups, and my love, compassion and understanding for Sue grew. I learned that nothing we did caused Sue’s mental illness. And I understand that all these years she has been battling an invisible foe, much like Tolkien’s Frodo trying to fight the demon Shelob in a dark cave.
The hardest part for me now is the sadness I feel when I think that my sister was deprived of a promising life. Once I recognized that she had been robbed by schizophrenia, I could truly forgive her and myself.
My hope is that the experiences of our family can help facilitate more positive conversations about mental health issues and the difficulties faced by families when their loved one is dealing with a mental health crisis. If our experiences can do this, then I am grateful for every aspect of this challenging journey. And I hope that the next time those elevator doors open, they will open on a scene of healing rather than chaos.
About the author
After raising her two daughters and son, Cindy finished her degree and spent three years living in British Columbia’s Fraser Valley, helping and advocating for her sister and niece and nephew. Now she lives in Coleman, AB, with the puppy she rescued in Mexico. She is writing a book about her travels in South America
Car 67 is an emergency mental health program in Surrey, BC.