Depression is accepted in society nowadays – but psychosis isn't

It started with the typical signs of stress. She couldn’t sleep properly, and she was extremely touchy and sensitive to noise. I felt for her because things really were difficult at work.

Later, her speech became very erratic too. She kept jumping from one topic to another, and it was difficult to follow her. It was then that I started to think her reactions weren’t normal.

My wife was the one who then said she needed to go to a hospital. She recognized the symptoms because she’d had an episode before. I didn’t know anything about the illness, and I just supported her without giving it much thought. Her parents and I took her to the hospital where she’d been treated the first time.

When we got there, they gave her strong medication straight away to sedate her. That may well have been necessary, but they did it without talking to her first, and she felt left out of the decision. Her dad’s a doctor and he talked to all the staff “from professional to professional.”

All she heard was: “Don’t worry, darling, we’ll sort it out.” The head doctor was pretty old-school. I’m sure he meant well, but he didn’t really explain much.

Being left out was really distressing for me too. I think patients with mental health disorders need to be taken seriously as human beings and treated with respect.

Even though it was her second episode, Paula didn’t really know what was going on and what the illness was. They didn’t explain things properly the first time around either. They didn't inform her about the illness itself, or how it might progress, possible relapses and early warning signs that can help prevent a psychotic episode.

At the hospital, it was quite frightening to see the other patients walking up and down the hallways, unable to stand still or sit still. And also to see my wife completely sedated.

Nobody paid any attention to me, or explained what was going on. I felt like more of a nuisance. “Oh, the husband’s here too” – that’s what it always felt like. My wife’s parents didn’t tell me much either. I suppose they wanted to protect her and not reveal all.

I felt left out, but also like it was too much for me to handle. Somewhere along the line, though, I managed to see things differently. I stopped taking things so extremely seriously and tried to stay calm. But it was a long process.

When Paula was in the hospital, I visited her every day to give her a constant in her life and so she didn’t feel alone. It was difficult because the hospital was a long way away, but I did it anyway. That gave us both a sense of stability: I was her link to the outside world.

Having set routines during my visits was just as important. We drank tea, went for a walk, and then she took me back to my car. Always the same procedure – something she could depend on. Having a structured daily routine continued to be important for her when she came back home too.

Paula was worried I’d leave her when I found out about her schizophrenia. But it’s not something I’ve ever considered. I’ve always been there for her. To me, it’s just an illness like any other illness. We all fall ill or have some sort of crisis at some point in our lives.

Several years later, not long after our daughter was born, my wife had another psychotic episode. The really stressful thing for me was having to look after the baby too. Luckily, I had an understanding boss, who gave me unpaid leave.

It was a very tough time for both of us. Paula was no longer able to breastfeed or look after her 10-day-old baby. Overnight, I became responsible for everything. That night, I had to get our daughter used to bottle-feeding while also worrying about my wife, who had to stay at the hospital.

Things would have been better if we’d known that psychotic episodes can be triggered by hormonal changes, too, so they're quite common during pregnancy and after giving birth. Then we would've at least been mentally prepared.

I just tried to function during that time. My wife and the baby were the most important things in my life. At that point, I didn’t have any time or energy to find out more about the illness and read up on it. I didn’t know much, and had to cope with all my questions and fears alone.

Paula took a long time to recover from that episode, and the hospital kept pushing her discharge date back. That obviously left her feeling pretty disappointed.

But the positive thing was the great support she got at that hospital. In particular, there was a course for patients, which explained in detail what causes the illness, what triggers episodes and how it’s treated.

Paula also learned a lot about the medication options there. It covered the basic medication you take every day, acute medication that you take if you recognize warning signs of another episode, and what emergency medication to take when your thoughts start spiraling out of control.

That prompted me to find out more about the illness too. I read guidelines for doctors and found information for patients and their families. That really helped me understand exactly what the illness is.

I think it’s important to learn how to recognize the signs of an approaching episode early on. That goes for the person who has the illness as well as for their family and friends. If you can do that, you can react quickly and prevent the episode. People should think of these early symptoms as a kind of “stress alert” – a warning to slow down and take a step back.

We do that in our day-to-day life, too. When things get too much for Paula, we take it seriously. If we’d planned to visit our family or go on a long hike on a glorious day, she might instinctively feel she won’t be able to cope. Then we have a quiet day at home instead. For me, it goes without saying that I have to respect Paula’s needs here. I’d do the same if I had a partner who had frequent bad headaches or wasn’t very active by nature.

One thing that was difficult for me was Paula’s vicious accusations in the acute phases of her illness. I tried to distance myself from what she way saying. I told myself to keep a mental note, and wait and see how things developed over time. When she recovered, she couldn’t remember the conversations and accusations.

I tried to show my support every time she achieved something, and tell her how great she was doing. We both went back to work gradually: Me after parental leave and her after the psychotic episode. I was really happy for her when she managed to go back to work.

If you ask me, Paula sometimes put herself under too much pressure. When she came home from the hospital after an episode, she felt a strong need to get off the medication as soon as possible and reduce the dose. I think it’s because she worries she might get too used to the drugs and become "addicted" to them. I think a little more patience might be better.

When our daughter was older, we explained that her mother has a special illness that can keep coming back. We tried to make it clear that things carry on as usual after an episode and that there’s good, effective medication. She accepted it and lived with it.

But it did something to her. She wondered whether she might have inherited the illness. And that was worrying for her. She went through difficult phases and had bouts of depression. But we wanted to make sure she always knew what was going on and not keep anything from her.

During my wife’s later psychotic episodes, I tried to make sure life stayed as normal as possible for our daughter. She was allowed to invite friends over – for instance, to play board games, watch movies, and for sleepovers. She didn’t go to the hospital with us very often. I think having a normal routine, going to school and spending time with friends gave her the stability she needed, and she felt she could be certain her mom would come back at some point.

My advice to people who have a loved one with recently diagnosed schizophrenia is to start by finding out and reading about the illness, and talk to doctors too. It is also important to talk to the person with schizophrenia and take them seriously.

What I’ve come to realize is that it’s an illness just like any other illness. Some people have things like rheumatoid arthritis, diabetes or depression. They have to take medication too, and get on with their lives as best they can.

One thing I would like to say is that there’s a lot of stigma surrounding psychosis and schizophrenia. Lots of people don't understand it and think: “That’s those crazy people in the secure wards.” Of course, people do behave weirdly in acute psychotic phases and it can be frightening. That makes treatment and dealing with the illness on a day-to-day basis more difficult for the person and their loved ones. We could get a lot more support if the illness were accepted and people knew more about it.

Not being able to just tell everyone about her illness is pretty tough for my wife too. She doesn’t want to tell her employer about it, for instance. And I can understand why. We have told a few of our very close friends and they’ve been a great help. But we can’t open up about it to others in our social circles.

Things are different for people with depression. Nowadays, people talk about depression and it’s recognized as an illness. If famous people like celebrities or athletes talked openly about their schizophrenia, it would help us all.

I’m grateful that there’s good medication that allows people to lead a normal life again.

There needs to be more awareness of the causes and symptoms of schizophrenia. Then more people would understand that it isn’t dangerous. It’s usually the people who have it that suffer most, and they rarely pose a danger to others.

I’ve learned to live with it, and I can say from my own experience that it’s okay, and nothing to be afraid of.