Caring for Paweł: Managing Schizophrenia as a Partner and Caregiver

Three years into their relationship, Paweł experienced an episode of psychosis, which led to a diagnosis of schizophrenia. His partner, Joanna, felt lost and uncertain. Despite being a well-known condition in psychiatry, schizophrenia is rarely discussed openly outside of medical circles, which left Joanna unprepared for Paweł's sudden change in beliefs and behaviour.

Today, Joanna fully embraces her dual role as wife and caregiver. She shares the beginning of her journey in this article, detailing the time when Paweł first showed signs of psychosis.

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.

This is Part 1 of Joanna and Paweł's story. Read Part 2 here.

After many years together, Paweł and I can talk about his schizophrenia as freely as we would any other topic. With a firm belief that "laughter is the best medicine," Paweł also loves to crack jokes, which can help memories of the tougher days seem more positive.

Having now been through a few episodes of psychosis, Paweł has good insights into himself and how schizophrenia affects him. He's worked hard to pinpoint his triggers and has developed “Schizophrenia Management Plans” for everyday use and when he’s in a crisis.

Working with me, his best friend, and his sister, he has also compiled a printed "manual" for his loved ones. Inside are daily support checklists, emergency contacts, and the steps we should take in case of a flare-up. Everyone knows their duties, and it's the easiest way to keep track of everything we need.

But it hasn't all been jokes, good relationships, and working systems. This is the result of several years of hard work. At the beginning of this journey, anyone would be hard-pressed to say the first months were much fun.

I’d known Paweł for three years before I witnessed an episode of psychosis

Schizophrenia isn't the most understood condition among the general public. Still, we've come a long way in the last 20 years. Back then, a stay in a psychiatric hospital, no matter the reason, was enough to pigeonhole a person for years.

The first time I saw Paweł experience an episode of psychosis, we were living together but not yet married.

When we'd met three years before, Paweł had just returned from working at a vineyard in Spain. He was healthy, tanned, relaxed, and seemed generally satisfied with his life. He'd returned to Poland for a fantastic job offer at a leading architectural studio. Our relationship seemed to be the last piece of the puzzle for his total happiness.

So, seeing him as he went through psychosis was a shock. This was not the Paweł I knew.

There was a stark contrast between Paweł and this new stranger. I didn't understand what was happening, but this version of Paweł seemed worlds away from the content, confident man I'd known and loved for three years. Life had been going well for him when I'd met him, and he'd been riding high.

Now, or so it seemed, I was seeing Paweł when circumstances weren't so great - or when the good things had lost their sparkle of newness and had become the norm.

And yet… even when wearing my rose-tinted glasses, I’d often noticed the “shadow” that had been following Paweł for weeks.

Overwork, stress, and lack of sleep began to take their toll

Paweł was very ambitious, worked hard, and aced his projects. But he often suffered from feeling overworked and underappreciated, and any satisfaction he felt from his success was short-lived.

He often spoke about reaching the heights that Daniel Libeskind or Zaha Hadid had achieved in their architectural careers. At first, I took this as a sign of Paweł's drive. But as time passed, his expectations struck me as slightly grandiose. I later learned that grandiose delusions, which are characterised by an unrealistic sense of superiority, have been connected to mental health conditions such as schizophrenia and bipolar disorder.

Meanwhile, Paweł was becoming increasingly irritated with his work and irritable in the office. He became involved in several conflicts with his coworkers. When he discovered no one was on his side during these disputes, he doubled down on his rants. At the time, he and his colleagues were working long hours, often pulling all-nighters. In hindsight, the work overload, lack of sleep, and constant stress may have triggered the episode of psychosis shortly to come.

Paweł’s speech and behaviour changes pointed toward psychosis, but I didn’t know what was happening

In the days leading up to the episode, Paweł worked harder and became more agitated than ever. I wondered if he was overdoing it on the coffee or taking other stimulants to help him get by.

He would ruminate over work problems, allowing his thoughts to chase each other in morbid cycles. He complained that his colleagues wanted to see him fail, but only after they'd taken advantage of everything he had to give. He insisted that the boss had "probably" instructed the rest of the team to conspire against him.

Then, one day, I received a call. Nervous and agitated, Paweł told me about a new sign calling him out by name on Warsaw's Palace of Culture. The sign said that if Paweł used his secret plans to build a replica Palace of Culture or Wilanów palace, "they" would let him join them.

I went over to his house at once, feeling an oncoming breakdown. Paweł paced the room. He said he'd been with a friend when he'd seen the sign on the Palace of Culture. He’d tried to show her, but she’d denied its existence and accused him of joking. He'd responded by hitting her in the face, convinced she was mocking him.

He told me he’d build a replica of either palace to prove himself if that's what it took. "They" knew he had the talent, and he deserved to be on their team.

Then, as if someone had flicked a switch, he couldn’t breathe. He cut himself off mid-flow and started panicking that “they” were listening to him through his company cell phone.

It wasn’t Paweł’s first episode of psychosis

This was a bad situation, and I could see how afraid and in pain he was. After a while, he agreed to go to the hospital with me.

But his whole demeanour changed when in front of the doctors. Gone were the circular, one-way conversations. He denied all the symptoms I’d reported, and his replies were short and to the point. The doctors said Paweł couldn't stay at the ward without showing signs of psychosis, so we went home.

Feeling helpless, I contacted Paweł's older sister, Eva. She told me that Paweł had experienced a psychotic episode in college, which was news to me.

I felt cheated that Paweł hadn't told me about what happened in college. As I wondered whether he'd kept anything else from me, I suddenly felt like the situation was more dangerous than I could handle.

Feeling helpless, frightened, and angry, I decided to leave

I made the decision to leave. I didn't feel great about doing so, but it's sadly not unusual in couples where one has schizophrenia.

Only a small percentage of people with schizophrenia will engage in physical violence over their lifetime (approximately 10%, according to a paper on Psychiatry Online), but psychosis-induced erratic behaviour can cause their peers to expect violence.

On the other side of the coin, a person with schizophrenia-induced psychosis may show no verbal or physical aggression. Sadly, however, changed or erratic behaviours beyond their control may still take a toll on relationships.

There is also the issue of stigma on top of any fear. A partner may find their loved one's condition "shameful" or overestimate the control someone has during a psychotic episode. Fear, tiredness, and lack of understanding can cause partners to leave. In a cruel twist of irony, love and acceptance could actually help their loved one adhere to their treatment plans and disease management.

Eva, Paweł's older sister, told me some of this when she contacted me. She asked me to meet Paweł, who was now in a mental health ward.

I also learned that Paweł wasn't intentionally hiding his illness from me. He did have a psychotic episode at college, but the following years were incident-free. 25% of people who develop psychosis will never have another episode, and, over time, Paweł assumed he was one of them.

I realised Paweł was the one for me

While I didn't jump to us getting back together, I agreed to visit Paweł when he returned from the hospital.

I was in for another shock. Paweł wasn't my Paweł. Instead, I saw someone who could barely muster up the energy to speak and appeared indifferent to everything around him. His lack of reaction when he saw me made me question if I'd lost him. My only shred of comfort was seeing he was no longer in danger.

I missed the old Paweł and wondered if he missed his old self, too. I was still scared of his condition, but something told me to hang on and wait. So, I did. I didn't date or spend my time being angry or self-pitying. Less than 1% of the population lives with schizophrenia, which marked Paweł as "different." But I also knew he was different in a way that had nothing to do with his disease. He was special.

A few months later, Paweł appeared in the doorway and looked at me through his old, conscious eyes. I knew then that I'd give us another chance.

End of Part 1. Click here for Part 2 of Joanna and Paweł’s story.

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Date of preparation: October 2024
D: COB-GB-NP-00534 (V1.0) / T: COB-GB-NP-00536 (V1.0) / M: COB-GB-NP-00535 (V1.0)