A schizophrenia diagnosis can be worrying and confusing for the entire family. Today, Katarzyna shares her son’s journey with mental illness and how they learned to cope through education, acceptance, and hope. Despite the challenges, Katarzyna and Patryk focus on progress and the possibility of a brighter future.  

*Katarzyna and Patryk are pseudonyms designed to protect the contributors’ privacy.

A version of the following article first appeared on Teva Poland. For mental health patient stories in Polish, visit Odcienie Zdrowia, Poland’s local Life Effects pages.

Sometimes, a mental illness can stay hidden for years before symptoms appear. . When my son, Patryk, was diagnosed with schizophrenia and psychotic episodes, it was a challenging moment for the whole family. The long-hidden nature of his condition made it difficult for both him and us to accept the diagnosis.

My husband’s a doctor and claims that schizophrenia is genetic. My brother has mental health problems. Although he was never diagnosed, my father-in-law struggled with mental health difficulties (or so we suspected).

So, Patryk may have inherited his mental health conditions from either side of the family.

Was emotional trauma the trigger for everything to come?  

However, while a genetic component is one thing, external factors can also trigger psychosis. Using drugs, for example, or going through intense trauma and emotional distress.

I'm convinced that a strained marriage and difficult family dynamics may play a role. That's how it was in our home.

Patryk is 22 now, and he experienced his first mental crisis when he was in middle school. Today, I interpret my son's flare-ups as a signal that he's overstimulated or overworked. I've learned to accommodate this by slowing down the pace of our lives.

As a child, my son was diagnosed with Asperger's syndrome, now called autism spectrum disorder (ASD). Yet, while I worried that he'd struggle, Patryk functioned well. He was a great student, social, and always cheerful. Everything was going so well that I sometimes thought, "What Asperger's?"

Time passed, and my husband and I started having problems in our marriage. Things changed in the family. Patryk was becoming a teenager – a sensitive time when his identity was taking form. Perhaps our family issues caused more damage than we'd like to admit.

Patryk was meant to grow up in a loving home filled with kindness and care. So, when his parents argued and disturbed that loving home, Patryk felt deep turmoil.

My son has always worn his heart on his sleeve and wants the best for everyone. But when the arguments between his parents didn't stop, he blamed himself. Many people with schizophrenia struggle with shame, self-blame, and fear.

Our cheerful, social son was struggling with suicidal thoughts  

The breakdown in our marriage affected us all. I was going through a mental health crisis. Patryk and his brother, a year and a half younger, became depressed.

Patryk had also started at a very large high school. The standards were high, but the school's sheer size overwhelmed him. Being used to small schools, the huge crowds and long corridors became too much to handle.

Surviving instead of thriving, I noticed that Patryk seemed lost and like he was falling behind. I took him to a psychiatrist. During the visit, I found out that my son was thinking about suicide.

The psychiatrist recommended that we take him to the hospital immediately. Once there, Patryk stayed for almost two months.

Home from the hospital, my son had his first psychotic episode

I visited every day. Patryk would meet me in the corridor because visitors weren't allowed to enter the wards. I studied his behavior when visiting, and it seemed like he was on the right track.

I didn’t guess that Patryk was putting on a brave face. He knew he could get out of there if he pretended to be in good shape.

We took him home. The second night back, Patryk had his first psychotic episode. It shocked us. There was no way to establish logical contact with my son. He didn't recognize me, and he was drowning in vast feelings of guilt. He wanted to apologize to all our neighbors.

He was in intense physical pain, too. He said he felt like something was cutting him up.

The next day, we returned to the same hospital we'd just left. It wouldn't be our last visit.

The place that was supposed to help my son only caused more trauma

The doctor was amazed to see Patryk again but admitted him anyway. Despite the "no relatives in the wards" rule, my husband insisted on seeing Patryk the next day. Staff let us in as an exception, and what we saw was traumatic.

Patryk was strapped on the bed with a seatbelt and removed from all human contact. The picture - the whole environment - terrified us. For once, my husband and I agreed on something: even a healthy person would break under these conditions.

There was no respect for anyone. No bedding, unhelpful staff, slamming doors, and shouting patients.

Later, Patryk admitted that staying there had been unbearable. Thankfully, he got transferred to another psychiatric hospital.

The new hospital had bare mattresses in the corridors where some patients slept. But there was also peace and quiet. In time, my son returned home.

I'd read that psychosis isn't too uncommon in people with ASD. Some research claims it can be as widespread as almost 35%. Children with ASD are sensitive to feeling overstimulated and may have brief episodes of psychosis during their teenage years. I believed this had been a single incident – and I held onto that thought.

We were told that my child had to be treated for two years for his brain to return to "normal." Doctors said that sleep was the most important aspect of my son's therapy, so he took strong medication that made him sleepy.

A supportive school stopped my son from being left behind  

Patryk wanted to continue his education. I started my school tours with one question, "Who would accept him?"

His previous high school was out of the question. The principal was scared and reluctant, saying they lacked the resources to admit such a student. They added that they doubted any school would take on the challenge.

As a growing number of high schools refused me, I became desperate. Luckily, the last school on my list - a small, private school - turned out to be friendly. As I entered, I saw a diverse group of young people. There were kids with colorful hair, kids dressed all in black, kids wearing hoodies... Some were yelling for attention, others wandering about.

The conversation with the principal was short. I didn't even have to finish the story; he immediately decided that this was the place for Patryk. My son could choose his field of study and his subjects within that. He could even choose a psychologist as his mentor. I could see that he felt good at this school.

The only thing was Patryk's treatment-induced sleepiness. He often dozed off during classes. And yet, even that wasn't a problem for the teachers. The school was unique.

The principal assured us that Patryk’s teachers would be very attentive to him. Still, with Patryk's consent, we felt it proper to meet our son's teacher.

We learned that our son was making progress in his studies. He was accepted and well-liked, and they even made sure not to disturb him when he fell asleep during class. Patryk had come to the right place.

For someone who lived with his condition, it was a remarkable feat that Patryk passed his final exams. He passed them quite well at that! After that, he accepted a place at the Military Technical Academy. After two years, his doctors began to reduce his medicine dosage.

Patryk’s studies turned out to be lots and lots of work. He liked the academy very much, but he was becoming overwhelmed.

A second psychotic episode led doctors to suspect schizophrenia  

My son began to feel unwell again. He was already on a low dose of medication, and when he went away for a few days, he didn't take any medication with him at all.

The pandemic had also affected him badly. At first, he said that COVID-19 wasn’t real. It took my husband falling seriously ill and planning for his death for Patryk to understand the reality of the situation. The fear and stress after the long period of denial hit our son doubly hard.

He started blaming himself again. On New Year's Eve, he experienced another period of psychosis.

This time, my son remained more self-aware and knew something was happening to him. He called an ambulance himself, and he recognized us. But the delusions were there. He thought people were talking about him on TV. He was certain he was being watched and that someone would break into the house.

My son ended up in a psychiatric ward during the height of COVID-19. It was, in short, a nightmare. Patients couldn’t leave, and conditions were awful. After too long, he was admitted to a specialist hospital. That was when his diagnosis first began to lean towards schizophrenia.

Learning how to care for my child with psychosis and schizophrenia    

We were told that meetings were being held for families and friends of people with schizophrenia. I went – of course.

At the sessions, I noticed that the others there were mostly women who, in turn, were mostly by themselves. I'd already seen similar among the parents of people with ASD.

In my experience, having a child with ASD can lead to some fathers feeling overwhelmed, causing them to pull back. It appears the same can be said for some dads and children with psychosis and schizophrenia.

Reading up on psychosis and schizophrenia 

After Patryk was diagnosed, I bought books about the illness to learn more. The best books used simpler language and served as helpful guides for friends and family.

I was looking for advice on how to let my sick child make his own decisions in a safe way. This was vital. I'd noticed that after their diagnosis, some patients seemed to spiral. They became fearful, ashamed, and anxious about their future. It seemed that "relying on parents forever" was a common fear.

This is why nurturing Patryk’s independence carefully and with love is so important.

Keeping the conversation going between us

Small achievements go a long way. It helped that Patryk and I had always been close and open with one another, especially since his ASD diagnosis. I spoke with him about the symptoms of schizophrenia, and we researched what to expect together to avoid any surprises.

This prep work may have helped with Patryk's self-awareness. That’s why he was the first to call an ambulance after recognizing the signs of a psychotic episode. He also keeps to his strict treatment regimen, whereas other patients may lose motivation.

Finding the positives among the struggles

ASD has turned out to be an unexpected ally. Patryk's ASD shows up as making him organized and with a need for routine. He accepts that he can't do things like drink alcohol, and he doesn't attempt to push against these facts. He's more mature than his peers in many aspects.

I often tell him that dealing with the illness has helped him grow and see things more clearly.

There are emotional struggles, but fostering love and care at home is my priority  

Unfortunately, this doesn’t bring him closer to his peers. He doesn't have a girlfriend or friends. He gained a lot of weight during his treatment, which didn’t help his confidence.

We try to see his illness as a process and a journey. Something is happening in our lives now, but we don’t know what might be around the corner.

As a parent, your child receiving such a serious diagnosis can feel like a type of death. I mourned the loss of my healthy child. I went through all the processes and emotions, starting with denial. After his first episode of psychosis, I clung to the hope that it was an isolated incident. But I was also dealing with depression and guilt, and I blamed myself.

I now try to look at the illness with an open mind and avoid panicking. Providing my son with love and joy strengthens him, whereas my sadness makes him suffer. I don't want to fall into depression, like many people I have met in parenting education groups.

I’m a mother. I’m Patryk’s mother. It's my job to make the home a caring place. When I smile and radiate peace, I spread love. Even the simple act of making soup and having its aroma fill the house brings warmth and security to others.

The success stories I've heard also keep me going. People with the same illness who manage their symptoms and treatment and who can function perfectly well. There are examples of people worldwide who work and live almost normally.

I choose to think that this happened to us for a reason. I don't know the reason yet, but I believe something good will come from it. This shows me that I'm in the acceptance stage, and for that, I’m thankful.

The information presented is solely for educational purposes, not as specific advice for the evaluation, management, or treatment of any condition.

The individual(s) who have written and created the content and whose images appear in this article have been paid by Teva Pharmaceuticals for their contributions. This content represents the opinions of the contributor and does not necessarily reflect those of Teva Pharmaceuticals. Similarly, Teva Pharmaceuticals does not review, control, influence, or endorse any content related to the contributor's websites or social media networks. This content is intended for informational and educational purposes and should not be considered medical advice or recommendations. Consult a qualified medical professional for diagnosis and before beginning or changing any treatment regimen.

NPS-ALL-NP-01417 NOVEMBER 2024