Schizophrenia and Marriage: Our Journey of Resilience and Understanding

Seeing Paweł go through a psychotic episode was a shock to his wife, Joanna, who'd always known him as a content and confident man.

In Part 2 of their story, Joanna shares how Paweł's diagnosis led her to relearn everything she thought they knew about schizophrenia. With the help of Paweł's sister and best friend, Paweł now has a 24/7 support system and crisis team. This support system has been a source of comfort and reassurance for Joanna and Paweł, who are happily married and stronger than ever.

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.

In Part 1 of their story, Joanna describes the "warning signs" that pointed toward Paweł's deteriorating mental health, such as increasing agitation, lack of sleep, and grandiose delusions. These signs, however, only became clear in hindsight. Being unfamiliar with psychosis and its symptoms at the time, Joanna felt left in the dark.

But despite the challenges, Joanna stood by Paweł and realized he was the one for her.

For Paweł and I to thrive as a couple, I knew I had to be proactive in his care. I immersed myself in understanding his schizophrenia diagnosis and broader mental health topics.

As I became more familiar with the condition, my reading went beyond papers and medical resources. Interesting theories like positive disintegration in "The Dynamics of Concepts” by Kazimierz Dąbrowski and literature such as Jerzy Krzysztoń's novel "Insanity" also gave me plenty to think about.

We received a range of perspectives and advice 

I also spoke to many doctors. Their advice about Paweł and my situation varied. Some outright told me to give up on pursuing a romantic relationship. Others, on the other hand, encouraged me to keep on trying. "But," they warned, "while Paweł’s health is important, so is yours. Keep track of your well-being, and don't be ashamed of re-assessing your situation if things become too much."

As our relationship continued to mend, Paweł confessed he'd been distant during my visits because he didn't want to "ruin my life." Neither of us wanted this idea to become a sticking point, so we decided to see a therapist to help with negative thought patterns.

Over time, Paweł understood that schizophrenia is an inextricable part of his life, but it didn’t mean an end to all happiness. His illness would have to factor into many of his decisions, but he couldn't decide whether his loved ones could handle it on their behalf.

Building Paweł's support network and crisis team 

Once he'd come to terms with his “new normal,” Paweł's sister Eva, best friend Kuba, and I joined forces to become Paweł's support network and trusted crisis team. Eva and Kuba were adamant they’d help me and Paweł and never leave me to manage on my own.

So, with Paweł at the lead, we spent a long time forming two "Schizophrenia Management Plans": one for daily living and one for crisis situations, such as a relapse.

I learned that life with schizophrenia could be good and happy if managed well 

Then Paweł and I took a weekend away to Krakow, which included a stay at the "U Pana Cogito" Hotel. The Cogito runs an integrated program for people with schizophrenia to find work and rehabilitate after a mental health crisis. I learned that people with well-managed schizophrenia could work, function, and build good lives.

When we returned, Paweł and I reviewed our “Schizophrenia Management Plans” again and discussed the importance of treatment adherence. Though treatment can't guarantee a stop to episodes of psychosis, it could help lessen the frequency and severity. Prevention is more realistic than cure.

Paweł didn't return to his old job, which was the best decision. Instead, he worked on reversing his burnout while keeping his mind stimulated. He kept up with designing objects and started sculpting, but now he works at his own pace.

We've both come to realize how important lifestyle factors are when managing episodes of psychosis. Overstimulation, stress, fatigue, lack of sleep, or even hunger could contribute to a downward trajectory that triggers symptoms.

Paweł's new mantra is, "My body is a temple." Through trial and error, he's making good progress in finding out what works for him and what doesn't. He avoids places and events with excessive noise and large groups of people, and he's careful to sidestep situations that may become claustrophobic, such as taking long journeys without the opportunity to disembark at any time. Many things can be re-arranged, adjusted, or predicted.

That said, life will constantly challenge us with new obstacles; foresight can only solve some things.

Not everything’s smooth sailing, but love, patience, and understanding help us pull through

Shortly after our wedding, Paweł started having olfactory hallucinations, which meant he was experiencing smells that weren't there. The hallucinations began with him sensing smoke everywhere he went, which turned into an obsessive fear of fire. The crisis team were quick to act this time, and his hospital stay was short.

As Paweł went through this episode, I was afraid for him and us, but I knew how important it was to stay calm. Doctors explained that emotional or dismissive reactions wouldn’t help Paweł; they could even worsen psychosis symptoms. Although the smoke may not have been "real," I had to remember that it was very real to Paweł.

So, instead of getting upset or insisting there was no fire or smoke, I remained composed and supportive until I could get Paweł the help he needed.

And, of course, we've had to make difficult decisions from time to time. We've decided against having any children, though not due to worries about them inheriting the disease. Children need lots of attention, but our time is spent managing Paweł's illness and minimizing disruptions.

Love is a choice – we choose to love one another through all obstacles

I'm glad to say the efforts are working. Paweł's episodes are becoming less frequent, which relieves some pressure. Likewise, he’s determined not to fall back on habits that may disrupt his journey. He even chose to give up his morning cup of coffee!

On my side, I know the most important thing is to show Paweł love and acceptance and be consistent with it. I'm very happy when things are going well, but I don't pile too many expectations onto either of us. Things change, and life is full of unprecedented situations. What I can do is help us avoid unnecessary challenges, take difficult circumstances in my stride, and love Paweł in times of sunshine or rain. It's the closest to a cure we have, and we're happy.

This is Part 2 of Joanna and Paweł's story. For Part 1, click here. 

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Date of preparation: October 2024
D: COB-GB-NP-00531 (V1.0) / T: COB-GB-NP-00533 (V1.0) / M: COB-GB-NP-00532 (V1.0)