Family Dynamics
How Children Are Affected When Their Siblings Have Psychosis
A Personal Perspective: What happens to the "well" child in the family?
Updated July 27, 2023 Reviewed by Ray Parker
Key points
- How can our "well" sons or daughters be so easily overlooked when they have a sibling with psychosis?
- For many left with the legacy of caring for their siblings, there is no specific training or education.
I watched them wrestle on the beach like puppies, my two handsome sons, beneath the towering cliffs of Monterey in California, their long surfboards propped nearby in the sand.
They are just two school grades apart, only they were not at school anymore. Aged 27 and 25, they were tall men. I was grateful for such carefree moments. They had been rare since our family was confronted with psychosis. A cumbersome diagnosis called schizoaffective disorder, hit Zach, the younger of the two, six years ago. We had been navigating the fallout ever since.
Dale, my firstborn, tapped out on Zach’s arm, signaling that the fight was over. Zach helped Dale to his feet, swept the sand from his brother’s back, and they bumped their fists together, laughing. I swallowed back tears. I was not sad so much as humbled—thankful that they had each other.
Mum always said that what she cherished most in life was the fact that we kids were close, that we had each other. I never fully understood until I had my own sons, and later separated from their father, until we were a family of three and had to look out for each other.
I wondered if life might have been days like this, simplicity and pleasure, for the rest of time, if Zach hadn’t broken from reality, if his experience hadn’t demanded that I drop everything, and everyone, including friends, and my wife, Nance, (whom I met after a decade of being a single parent), and even Dale, to try to help Zach to find his footing again.
The "Well" Sibling(s)
I was not unusual in this regard. Psychologist Diane Marsh of the University of Pittsburgh, in her book, Troubled Journey, maintained that "as hard as parents may try to meet the needs of their well children, time and energy are simply finite. Siblings often feel like the forgotten family members. Everyone else's problems are more important than theirs." I read this with regret, but also relief that I was not the only parent struggling to find balance.
Marsh recognized that the "well" siblings in families—where one child suffers from mental health—have a fear that they might catch or develop the same illness, and a sense of survivor’s guilt, if they don’t. "Well" siblings also have a much higher likelihood of suffering post-traumatic stress because of what they have witnessed.
I apologized to Dale recently about him being eclipsed by Zach’s psychosis, and how I was too preoccupied to see it. I asked him how he felt about the future, “I’m painfully aware I won’t be able to replace you,” he said. “I can’t be everything to Zach. It would be too much of a strain on my own mental health.”
Sibling Study
His response chimes with a study from the University of Iowa about siblings’ coping strategies and mental health services, whereby the greatest source of stress for 612 siblings (82 percent) was "concern about who will take care of the vulnerable sibling when parents no longer can."
During the early phase of Zach’s diagnosis, it was Dale who listened to Zach’s fears that his friends were members of the Russian mafia out to harm him. And it was Dale who drove Zach home after a party one night unable to stop for gas, for anything at all, in case these “friends” caught up to Dale’s car. In the days that followed, the revolving door of Zach’s hospitalizations made me myopic.
I believed that Dale was fine. I turned to him for help, and looked to him to tell me where Zach was, who he was with, and if he was smoking dope or had expressed suicidal ideation. Upon reflection, the pressure must have been intense.
At the National Alliance on Mental Health (NAMI) Family-to-Family course that I attended, I met Rita, an occupational therapist who didn’t want to involve her other children before their time. She carried the burden of care alone, despite her "well" son having a psychology degree and working in mental health.
Jae-Sang, on the other hand, a mother from Korea, had a daughter with a diagnosis of schizophrenia, who relied enormously on her little sister for emotional support, and Jae-Sang couldn’t have imagined it any other way: her younger daughter was her rock.
Challenges
Whether we feel able to depend upon our vulnerable child’s siblings now, or hope that they will take up the mantle after our death, the reality is complex: A lack of safe, affordable housing for those with mental health challenges, the archaic and bureaucratic mental health system, and the burden on family members in this failed era of community care, is a grave concern. For many who will be left with the legacy of caring for their siblings, there is no specific training or education on how to deal with crises. Family programs and support groups are made up almost entirely of parents or spouses.
I couldn’t help but ask myself why there wasn’t more interest in the person who is going to have the longest relationship of anyone with the person with a disability—the sibling.
Research from the American National Institute for Mental Health (NIMH) has shown there are many factors that will affect whether the sibling(s) of a child with psychosis will rise to the responsibility that they inherit. There is the birth order in the family, the age difference, and the nature of the relationships that ensued prior to the onset of illness, along with parental expectations, cultural norms, economics, and geography.
But I believe it is more than that. It is about not having a safety net, a support group. This was proven when four years ago, we made the move back to the U.K., the land of our births. It was here during the height of the pandemic that I found Safely Held Spaces, a nonprofit that sees us in all of our pain and does exactly what it says, holds us safely, and allows us to hold each other. Here there are not only groups for parents but for siblings too, the very individuals that are the next generation of activists and advocates.
After telling Dale I was sorry for my shortsightedness in the wake of his brother’s challenges, I turned to Zach for his perspective, but years of being silenced, misunderstood, and labeled have borne a cost. He shook his head and looked troubled. “I don’t want to talk about the future,” he said. "I don’t even want to think about it. It scares me.”
These days when Dale and Zach are together, I watch them with a joy tinged with sorrow. I picture a day in the future without me in the frame. My hope, of course, is that society will become kinder, with adequate provision for those who are vulnerable, that Zach will heal, and become more independent, and that he and his brother will have the life I dreamed for them both. But I am acutely aware Dale might one day be the only person Zach will have to turn to for help.
For now, I’ll do everything I can to make sure Dale will not have to take on more than he can manage. I want him to be free to fall in love, to travel, and to live independently, to be Zach’s big brother, his wrestling partner, and his fellow surfer at the beach.
