qwertyuiopasdfghjklzxcvbnmqwerty uiopasdfghjklzxcvbnmqwertyuiopasd fghjklzxcvbnmqwertyuiopasdfghjklzx cvbnmqwertyuiopasdfghjklzxcvbnmq WOW KIJK IK HEB IETS GEMAAKT DE LAY-OUT IS ECHT KUT EN wertyuiopasdfghjklzxcvbnmqwertyui KINDERACHTIG opasdfghjklzxcvbnmqwertyuiopasdfg hjklzxcvbnmqwertyuiopasdfghjklzxc vbnmqwertyuiopasdfghjklzxcvbnmq wertyuiopasdfghjklzxcvbnmqwertyui opasdfghjklzxcvbnmqwertyuiopasdfg hjklzxcvbnmqwertyuiopasdfghjklzxc vbnmqwertyuiopasdfghjklzxcvbnmq wertyuiopasdfghjklzxcvbnmqwertyui opasdfghjklzxcvbnmqwertyuiopasdfg hjklzxcvbnmrtyuiopasdfghjklzxcvbn mqwertyuiopasdfghjklzxcvbnmqwert yuiopasdfghjklzxcvbnmqwertyuiopas I DIDN’T CARE ENOUGH
IF YOU DO FEEL FREE TO CHANGE IT
Interview special part I
Menno (49 years old) has schizophrenia. We interviewed him about his diagnosis and its effects on his life. Note: The interview was held in Dutch and later translated into English. We therefore do not claim that the entire interview was literally quoted. However, we tried our best in our translation to stay as close to the words spoken as possible.
Schizophrenia in general We started the interview by asking Menno some questions about schizophrenia in general. Who, after all, could explain this better to us than someone who has experienced it himself?
Can you give us a brief description on schizophrenia? “Schizofrenia is a chronic condition in which the patient finds it hard to separate reality from things that aren’t actually there. The main symptom of schizophrenia is getting psychoses. A psychosis is when you’re very confused and are stuck between fantasy and reality. There are three main types of schizophrenia: paranoid schizophrenia, disorganised schizophrenia, in which the thought process is disorganised, and catatonic schizophrenia, “I was walking through in which the patient gets into a kind of stiff state with very robot-like or the halls screaming ‘I sometimes barely any movements.”
know exactly what’s going on!’ when really, I didn’t, of course”
Which of these three types do you have yourself, if we may ask?
“That’s actually a weird story, because my diagnosis was different at my first admission into the mental hospital than at the second. At the first admission I was catatonic. I was walking around very robot-like and totally confused. At my second admission, I was diagnosed with
paranoid schizophrenia. I couldn’t sleep and was walking through the halls shouting things like “I know exactly what’s going on here! I know exactly what you’re doing!” when really, I didn’t, of course.”
So you can have more than one type of schizophrenia? “Well, yes, apparently it can change over the years. I didn’t know that either before my second admission, but apparently it’s possible.”
What are the main symptoms of schizophrenia? “The symptoms of schizophrenia are divided into positive and negative symptoms. Positive and negative in this case don’t mean that there are nice and not nice or good and bad symptoms. Positive symptoms means the things that you gain because of schizophrenia; like delusions and hallucinations. Delusions are when for example you see a cat, but think it’s a lion. A hallucination would be when you see a cat and you know that it is a cat, but you still believe it’s a lion. So you’re aware of reality, still you believe the non-existent “The drugs were fun at image. Negative symptoms are abilities that you lose because of the time, but the price I schizophrenia, for example the ability tell fantasy from reality.”
Is schizophrenia hereditary?
paid for it was very high”
“Yes, it is, my mother also has schizophrenia. From the Dutch population about 0,8% has it. And if you have one parent with schizophrenia the chance of getting it increases to 10%. If both of your parents have it the chance doubles. That is also the reason why I never wanted to have children, because I find the risk too big. But although genetics do have an influence, it is not the only factor. There was a research with identical twins in which one of the them had the disease, but that didn’t mean that the other halve of the twin suffered from it, too. Also, I used drugs when I was young, which doubles your chance of getting schizophrenia. Even if you don’t smoke every week. I admit it was fun at the time, but the price I paid for it was and still is very high.”
Living with schizophrenia, part I: diagnosis We questioned Menno about his diagnose and what happened afterwards. He told us his story – but in his own way: open, but without sob stories and carefully guarding the borders of his privacy. A respectable attitude, and a very interesting story.
When did you find out you had Schizophrenia? “That was after my first commitment into the mental hospital, when I was a student.”
What was this like for you? “It was really weird. They just gave me this booklet about schizophrenia and its symptoms and told me that was what I had. At first I didn’t want to believe it. I thought they had just assumed I had schizophrenia, because my mother also suffers from it. I didn’t want to accept it, either, I wanted
nothing to do with this label. But when I started reading the booklet, I slowly started realising that I did recognise these symptoms and that maybe they were right.”
You said that you were diagnosed after your first commitment. What were you committed for, if I may ask? “I was committed because I was psychotic. Some weeks it went well and I could just do my study but other weeks were horrible. Because I didn’t have any medication it was very unpredictable and it kept getting worse. I thought committal wasn’t necessary and I had all kinds of theories about it. Because I refused, my parents started a lawsuit. I got compulsory admission for at least three weeks, and after that the doctor would decide whether I was healthy enough to leave. When I was finally committed I was relieved, because I had done everything I could, and I hadn’t succeeded. But now I was finally getting what I needed. So in the end it was positive.”
“When I was finally committed I was relieved.”
What happened after you were committed and had received your diagnose? “I had many kinds of therapy: art groups, talk groups, music groups, etc. I also got medication, which worked okay but had quite some side effects that I really needed to get used to. The medication I have now doesn’t have these.”
Living with schizophrenia, part II: daily life Because we were interested in the impact schizophrenia has on Menno’s daily life, a big part of our interview evolved around this subject. We certainly got the answers we were looking for – and more.
Do you use a lot of medication nowadays? “I use only one type of medication now. There are people who use a combination of different medicines, but the medication I use now works just fine. I switched types after my second psychosis, when it turned out that I had switched types. Medicines don’t cure schizophrenia but they help to limit its effects. You can’t be cured from schizophrenia, but you can learn to cope with it, which is what they try to do with these therapies and medicines.”
What do you suffer from most in your daily life? “I have a bad memory, but I’m almost fifty so I guess that’s normal. In the past I sometimes suffered from dizziness, because of my medication. But I got rid of that when I switched medication. I sometimes am insecure or afraid. Mostly when I am out of my normal routines. But even that is human. I don’t feel like I suffer from schizophrenia a lot.”
Are you restricted by the disease? “I probably am, but I don’t really notice it a lot. I did take a psychological test once which didn’t have a very good outcome. But I try to work a lot on my photography, to focus on things I like.”
How do you cope with it? “Mostly by just taking my medication, and also I do a lot of sports. It is important to have a healthy lifestyle and to stay busy.”
Is it hard for you to get a job? “Yes, you can forget about that. I did have a job for a short time. I did the administration at an activity centre, which was actually below my level, because I had studied Economics at the university. It was fun while it lasted, but I didn’t get a good job out of it. On top of that I am “There are a few big already fifty years old, so I don’t really feel the need to start a new job now. I am able to entertain myself.” life events around
What is the reason you can’t get a job? Is it hard to keep once you have it, or won’t the employers give you a chance?
which psychoses often occur.”
“Mostly the first. I wasn’t able to keep the job, because the pressure became too high. That was also the reason I became psychotic for the second time. It wasn’t the only factor, though. I had just come back from a trip to a day activity centre in Poland, where I caught a virus which resulted in me not being able to ‘hold in’ my medication. My dad had also just had a heart attack, so I visited him in the hospital every day. All these factors contributed to me having my second psychosis. You can say that stress has a big influence on it.”
So you’re stating quite some influential factors here. Can we conclude that psychoses always have a clear immediate cause or causes, like these? “They often do. There are a few big life events around which psychoses often occur, events like going to college, getting married, getting a child… This is actually the same for depression, you also see that occur often around these big events.”
Have you ever been depressed because of the disease? I DIAGNOSE MY PSYCHIATRIST AS A CHRONIC LABEL STICKER
“No, fortunately not. You can also have psychoses because of a (manic-) depression, but that is still different than schizophrenia. A manic depression, which is nowadays called bipolarity, is also a lot easier to diagnose. If you’re manically depressed, you are happy for a few weeks and then you feel totally awful. I would hate that. The difference is that with schizophrenia you also have delusions and hallucinations.
Now that I’m reminded of it, I know this nice saying from Loesje, which says: “I diagnose my psychiatrist as a chronic label sticker” which is actually exactly what psychiatrists do: all the time they have to look at patients and try to puzzle out what diagnosis fits them.”
Do the people around you treat you differently? “Only in the beginning. Nowadays, they don’t really treat me differently. Most of the people in my life know about my disease, for example my mother, father, sister and my friends, but they know that there are no real problems. When I was committed they supported me, which was really nice. It works way better, too, to just keep on seeing your friends and all. If you’re just sitting around with an attitude like ‘why is the world doing this to me?’ that doesn’t help much in your coping with the disease.”
Do you also get negative reactions? “No, not really. Many of my acquaintances are somehow connected to psychiatry, so you won’t really get any negative reactions from them. There are, however, a lot of prejudices about psychiatry. A friend once came to my housewarming party where I had invited a lot of ex-psychiatric patients and he said to me that they were actually surprisingly normal. I think that is also a bit to compensate for their disease. Most people just want to be normal, to fit in and not stand out.”
“The main prejudice is that people think schizophrenia means having a split personality.”
Despite of this normal behaviour, is there perhaps a way to recognise people with schizophrenia? “Well, if people are psychotic and they are talking to themselves on the streets, you’ll know. *jokingly* But nowadays you can of course take your mobile phone with you, so you won’t stand out.”
You also give some kind of lectures on schizophrenia, how does that go?
“I sometimes used to go to the ‘Boei’, which is a café in Eindhoven, where people who have been in contact with psychiatry meet. The director of that café gives education to schools about psychiatry and I have joined him in that for about 20 times. I also used to teach a course which was about what you can do yourself to recover from schizophrenia. Because you cannot be cured from schizophrenia, but with medication and sensible living you can cope with it. In psychiatry they call this the coping mechanism.”
This may sound weird, but are they also positive effects of the disease? Maybe in the way it has changed your life, or things it may have taught you? “I don’t really know. If I hadn’t had the disease I would have been a different person. But there’s nothing positive about being diagnosed with schizophrenia. What is positive, is that I can live a good life with the disease, while there are lot of people for whom this is not possible and who are always suffering from the disease.”
Are there a lot of prejudices on Schizophrenia? “Yes, there are quite some. The main one is that people tend to think that schizophrenia is about having a split personality. That’s because Schizophrenia means split midriff in Greek, and the Greek believed that the spirit was located in the midriff. So the name to them actually meant a split spirit.
Nowadays we know that this isn’t really correct, but many people still think it is. Nowadays there is a discussion going on about whether and how to rename the disease. My preference goes to Dysfunctional Perception Syndrome (DPS), because I think it best describes the disease. But the most popular one is Psychosis Susceptibility Syndrome (PSS), which means you are sensitive for having psychoses.”
A final note When interviewing Menno, we tried to leave it up to him how personal he wanted to get. He preferred keeping it about the disease itself and less about the way he experienced it. When later, in a conversation after the interview, we spoke about this, he explained: Schizophrenia is different for everyone. Everyone experiences it differently, every psychosis is personal. In psychiatry, not much attention is paid to the way you are experiencing you psychoses. They focus more on the disease itself. They won’t stop you if you start talking about your personal experiences and feelings behind the disease, but they’ll just listen, nod and go on to the next part of the therapy. It’s very hard to explain to other people what schizophrenia is like for you. A friend of mine once got asked the same question. He replied with a simple rhetorical question: “try telling me what a
strawberry tastes like.” I think this very well describes how hard it is to explain things like schizophrenia.
Note: Menno preferred not to have a picture of him included in the article. The pictures we used instead are not our property. Their sources can be found in the credits in the back of the magazine.
Interview special part II
Annick (16 y/o) had an uncle with schizophrenia. Interested in this perspective, we asked her what it was like for her as a child to have a relative suffering from the disease. How would you describe your uncle, according to your memory? “Well, he had more problems than just schizophrenia, like his drug and smoking addiction. So add those all up, and you can imagine it’s not an everyday person. I would describe him as chaotic, unorganised, not really down to earth. He looked kind of shabby, especially when he’d forgotten to shave again, but he had a friendly face. And he was friendly and caring.”
“I’d describe him as chaotic, unorganised, not really down to earth.”
Do you know when your uncle was diagnosed? “I know he only suffered from schizophrenia the last couple of years, so I’d say about 5 to 8 years ago.”
When did you, yourself, get to know your uncle had schizophrenia? “I didn’t until after he passed away. I always knew something was up, but couldn’t quite figure out what. Keep in mind that I was about 12 years old when he passed.”
There are 3 main types of schizophrenia, do you know what type your uncle had? *We explain her the main types*” Uhm, he had hallucinations and ideas in his head that just weren’t right. For example he thought he was married to his psychologist and he was convinced he was Jesus for a while. So I think that’d be paranoid schizophrenia.”
How much and what did you notice in his behaviour? “He was always a bit strange, but I don’t have a clear memory of his behaviour.”
Did you or other relatives (have to) treat him differently because of his schizophrenia? “My grandparents did, who were his parents so it isn’t that strange. He wasn’t really capable of taking care for himself, so my grandma helped him. And when he acted odd, no-one really reacted.”
“When he acted odd, no-one really reacted.”
Did he treat you differently? “No, as far as I remember he was a nice and kind man, who was trying to be good for his family.”
Was his relation to you and/or others affected by it? “Yes of course, it especially affected my grandparents. I know it was hard on them. And my mother and my aunt also had trouble with it, but they never really spoke about it.”
Did he ever speak about his syndrome to you or other relatives? Did others ever talk about it? “I don’t think so, I don’t know if he really realised what was going on. As far as I remember no-one really talked about it, or at least not in my presence.”
Was he using medicines? And/or did he get treatments/therapy?
“As a kid I was a bit scared. He was my crazy uncle.”
“I know he was in therapy at a place called ‘de Grote Beek’ in Eindhoven. But I think it was not only for his schizophrenia, but also for his drug addiction. As far as medicine goes, I don’t know.”
Did he have a job? Was his life affected by schizophrenia in other ways that you know of? “He did have a paper-round at one point, but he couldn’t really keep on doing it, because of the chaos in his head. His life was a mess; it was unorganised, no structure whatsoever. But I can’t say whether this was because of his addiction or his schizophrenia. It was probably the combination of both.”
To what extend did you understand why he behaved the way he did? And other relatives? “I did not understand it at all, but I guess the rest of my family did.”
Did it affect the way you felt/thought about him? Perhaps it scared you off a bit? “As a kid, yes, I was a bit scared. He was my crazy uncle. But I got used to it and I didn’t mind it so much after a while. He was just unpredictable so I was never really at ease with him, but that is mostly because I didn’t understand what was going on. When I think back, I wish I had known, because then I wouldn’t have been scared and I could’ve enjoyed his company more.”
Did you and/or others find his syndrome hard to deal with? “I think everybody thought it was hard to deal with, because you never quite understand what is going through his head and why he does certain things. In the end, he was probably the one who suffered the most from it, and I know my family realised that. Because we only spent a little time with him, but he had to deal with it every single day. And I think that is important for everyone to realise, because it’s much harder for the one who suffers from it than the relatives.”
“We only spent a little time with him, but he had to deal with it every single day.”
Note: Annick preferred not to have a picture of her included in the article. The pictures we used instead are not our property. Their sources can be found in the credits in the back of the magazine.