“When all of this began, I was very mad at my brother. I didn’t want to go to therapy for the problems he caused. I didn’t know that I was loving someone with schizophrenia, let alone how to love someone with schizophrenia.”

Diane and Tom were very close siblings growing up. They bonded over their love of skiing and shared many adventures together. Tom, the youngest of three, did exceptionally well in school and kept a close circle of friends. Diane describes her brother as gentle, kind, and easy to love. 

Right around the time Tom turned 21, his life began to change. He started sleeping less and isolated from his friends in college. His grades dropped and he started experimenting with drugs. 

Diane sensed that Tom was going through something more than a rebellious streak, but had no idea the deep changes that accompany psychosis- extreme shifts in how the mind relates to itself and the world. 

The following story is part of our lived experiences series, in honor of National Schizophrenia Awareness Week. It features the story of Diane and her younger brother Tom, who lives with schizophrenia. The names in the story have been changed to protect everyone’s anonymity.

When Life Began to Change

Tom made it through an Associates Degree and then, after a period of time living at home, withdrawing from his family, working for his father’s construction company, and spending his money on drugs, decided to finish his Bachelor’s Degree. 

As Diane predicted, her brother showed up in their parents living room unannounced, and had dropped out of college. He was 22 years old.

“We were hanging out one evening, when Tom, completely sober, with this kind of glossed-over look on his face, asked me, ‘Where’s your mother? Where’s your friends? He looked at me like I was a complete stranger. The next morning, I asked Tom if he remembered our conversation from the night before. He shook his head no. There was so much fear in his eyes. I knew at that moment that something was really wrong with my brother,” says Diane.  

Before Tom was diagnosed with schizoaffective disorder and schizophrenia, he continued to get sicker. Then, the psychosis and hallucinations set in. 

Tragically, after a night of drinking, Tom unknowingly ran over his best friend with his truck and killed him. When the police arrived, Tom was hallucinating and hearing voices that weren’t there. He was taken into custody and charged with vehicular manslaughter. 

Between the accident and sentencing, Tom’s parents admitted him to a psychiatric hospital for treatment of schizoaffective disorder and schizophrenia. He resisted medication and deeply distrusted the doctors. 

When he was released from the hospital, Tom’s family was able to get him back on medication for a short period of time, before he stopped taking it all together.

Tom was given a short psychiatric evaluation by jail staff, who decided that he didn’t need medication, and that it was too expensive. In a matter of three months, Tom lost 45 pounds, neglecting himself to the point of malnutrition. He was in jail for three years, a reduced sentence by request of the mother whose son died in the accident.

The Cycle of Relapse

Within the first six months of involuntary court mandated medication, Tom stopped taking his medication. His psychotic episodes worsened. He was loud, angry, and paranoid. His family was able to get him committed to a psychiatric hospital. 

To everyone’s surprise, Tom’s ex-girlfriend came back into his life after he got out of jail. They married, Tom went back on medication, and his family regained hope. 

“My brother is the most gentle, loving person I’ve ever met when he’s medicated. When he’s not, he’s the scariest person I’ve ever met,” says Diane. 

Tom went on and off medication for many years. In the grip of psychosis, he’d disappear from his wife and turn up several weeks later. He was nocturnal. His eyes disappeared into black circles. He’d pull massive jackets over himself and shrink into the fabric. 

Tom lived in his own reality, and no matter how many times his family, his wife, or the doctors tried, they could not convince him to remain on medication. 

“My family walked on eggshells for many years. Every time I heard the ambulance or sirens screech down the road, I’d freeze and call my mom. “I spent my adulthood watching my younger brother deteriorate, afraid that he was going to kill himself or someone else at any given moment,” says Diane.

There’d be no Christmases, Thanksgivings, or New Year’s Eves without the family wondering.

A Glimmer of Hope

In the darkness, there was a light of hope. Diane found out that she was pregnant. After ten years filled with misery and uncertainty, she thought her family would have this baby to celebrate. 

Diane cut off contact from her brother and his wife, to take care of herself and her baby. One afternoon, Diane got a text message from Tom, who sent a picture of a sonogram. He was still unmedicated, severely psychotic, and he was about to be a father. 

“My sister-in-law delivered her baby prematurely. My nephew was one pound and ten ounces. He was rushed into the NICU and no one knew if he was going to survive,” says Diane. 

Despite the arrival of COVID-19 and the heightened risk of exposure, Diane had a healthy pregnancy. She focused on mothering her new baby, still scanning the sidewalks for her brother being rushed away in a police car or ambulance, with the acute sense of another tragedy. 

At this point, there was a new mobile mental health unit which provides crisis intervention, resources, and support in town.

“We thought we’d be able to get Tom involuntarily committed,” says Diane.

The Last Chance

The mobile mental health unit will not respond if individuals are actively under the influence of alcohol or undergoing detox from substance use. Tom got his license reinstated when he got out of jail and drove to the liquor store regularly. 

“We were finally able to call the mental health unit at 9 in the morning. Tom hadn’t been drinking. When the team of responders arrived, they took one look at my brother and called for police backup. That’s when he ran,” says Diane. 

Tom hid in the rooftops on a covered bridge for as long as he could evade the police. They eventually caught him, brought him to the hospital, and he was committed for six weeks.

When the court order ran out everyone held their breath, unsure if the cycle of improvement and deterioration, from going on and off medication, was broken.

A New Life

To this day, Tom has been medicated, sober, working a steady job, and taking care of his son and his wife. 

“I don’t think my brother will ever be as social as he once was in his teenage years, but he’s healthy. He and his wife keep to themselves and their son is happy,” says Diane.

A Sister’s Reflections

When a person at any age is diagnosed with a complex mental illness, like schizophrenia, it can change not only their life but their family member’s lives forever. Siblings of individuals with schizophrenia may shoulder significant caregiving responsibilities, they may feel shame, embarrassment, or resentment at their sibling, they may not understand what their loved one is experiencing, or how best to support their loved one through treatment. 

Despite the pain, sadness, and frustration of dealing with her brother’s chronic, incurable disease of the brain, Diane says that she has learned so much through the process. 

She read everything about schizophrenia that she could get her hands on to cope with her brother’s diagnosis. She learned about specific symptoms, risk factors, and treatment options to gain some sense of control, during unpredictable and defeating times. 

Most importantly, Diane started working with a therapist to address her own depression and anxiety and began to identify the generational trauma hidden in her family’s history. Through honing in on and healing her abandoned wounds, Diane has learned how to reparent herself and parent her daughter. 

“When all of this began, I was very mad at my brother. I didn’t want to go to therapy for the problems he caused. I didn’t know that I was loving someone with schizophrenia, let alone how to love someone with schizophrenia,” says Diane. 

Today, Diane destigmatizes mental illness and schizophrenia by sharing her family’s story and listening intently to other people’s stories of mental illness with compassion. She initiates conversations about mental health with her daughter and fosters a home environment where emotions are validated and normalized. Diane will share her family’s mental health history with her daughter, when she’s a teenager.

Diane encourages anyone who’s going through the process of loving someone with complex mental illness to take care of themselves, carve out time to work with a therapist, and talk to others who will listen and support you. 

“The only thing you can control is how to take care of yourself,” says Diane. “Give yourself grace and let the doors of compassion open. You are not alone.”

Seeking Support for Schizophrenia

If you or someone you know is in crisis, you can call or text 988 to be provided with confidential emotional support 24/7.

At Handel Behavioral Health, our therapists offer comprehensive and effective treatment for schizophrenia, which may include medication, counseling, family therapy, and social support. When schizophrenia is appropriately treated and managed over time, people with schizophrenia are capable of living fulfilled and successful lives. 

To start working with one of our therapists for schizophrenia online in Massachusetts or in-person from our offices in Amherst, Natick, Franklin, West Springfield, or Wilbraham, contact us today at (413) 343-4357.

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