Unbenannt-2 According to data collected by the Substance Abuse and Mental Health Services Administration (SAMHSA), an estimated 43.5 million adults in just the United States of America were suffering from a mental illness in 2014. Fewer, but still about 1 out of every 100, are affected by schizophrenia. As most people know, there are a number of different mental disorders with different presentations and varying degrees of severity such as depression, bipolar affective disorder, or schizophrenia.

Nonetheless, mental illness is a topic that most people don’t really like to talk about, and when they do, many people still tend to stigmatize those suffering from it. Plus: May 2016 is Mental Health Awareness Month – this year’s motto is “Life with a Mental Illness”. So what better way to contribute to de-stigmatization and raise awareness for the topic of mental health than to let the people affected by it speak for themselves?

For the rest of April and during May Exposing The Truth will publish a series of interviews conducted with people living with mental illnesses. This week I had a nice chat in the sun with John*, a 25-year-old student from Germany who lives with schizophrenia.

According to information provided by the World Health Organization, schizophrenia is a mental disorder affecting more than 21 million people worldwide. It is characterized by distortions in thinking, perception, emotions, language, sense of self and behavior. Common experiences include hearing voices and delusions. 

Schizophrenia is not a personality disorder or a behavioral disorder, although these can be present at the same time. Schizophrenia in one person can express itself quite different than in another person, so it is important to know John’s answers are not representative of everyone or even most who have schizophrenia.

Hey John, thanks for meeting me today and opening up to me about your mental health. Let’s talk schizophrenia. Do you remember how it all started?

I guess I have been suffering from schizophrenia since I was a child. I remember one experience from my early childhood that drove me into a kind of schizophrenic state, which was an attempted burglary when I was around six or seven years old. I was lying in bed and suddenly I was awoken by a strange rasping sound and couldn’t fall asleep again. I then went to tell my mom about it and she eventually heard it too. As she was too afraid to check on what it was, she sent me first. When I parted the curtains, I actually saw a man who was trying to break in our flat. I was in such a shock and remember thinking about the meaning of this incident for a long time – what it meant that this man suddenly appeared at our flat, what would have happened if he actually managed to get in… It was hard for me to process this as a child.

Wow, this can be a truly overwhelming experience, especially for a child this young. Do you have any other idea what might have caused your disorder?

There is a genetic component to it as well as there is another person suffering from schizophrenia in my family. At the age of 23 – which was at the time of one of my worst schizophrenic phases so far – I also realized that different environmental factors play an important role when it comes to mental illness. There are certain people and circumstances which can definitely contribute to or worsen your schizophrenia, if you have the predisposition. At that time, I was living in a shared apartment. As I couldn’t lock my room, I felt like every time I left the house, my roommate went in there and messed with my stuff – shifted it around and so on. This definitely contributed to the deterioration of my condition.

Most of the time I do not realize that I am actually in the midst of a schizophrenic phase when it’s happening. Only when I think about it afterwards and reflect on the things that I did, I realize that I was acting strangely.

Speaking of behavior which might seem odd to some people… Many people have a certain clichéd image in their head when they hear the term “schizophrenia”. I guess this conception is mostly based on how schizophrenia is depicted in Hollywood movies as schizophrenics are presented mostly as violent psychopaths. Take for example Jack Nicholson in Stanley Kubrick’s “The Shining”. What do you think about this stereotype?

I think this depiction is definitely flawed. Schizophrenia is characterized by a number of different symptoms. It is a nuanced illness and can also manifest itself in even the smallest details. A schizophrenic person might for example draw a tiny dot on a wall somewhere, thinking that he or she might deliver a big message through it. In this way a small dot might gain a lot of meaning for someone who suffers from schizophrenia. But the whole “deeper meaning” thing can also turn into violent behavior – I am definitely not this way, but maybe this is where the cliché of the psychopathic schizophrenic comes from. When I hear that I have to think about crazy stories, like Charles Manson listening to “Helter Skelter” from the Beatles, thinking it contained a racist message and as a result carving a swastika on his forehead. People like him are of course an extreme and are fortunately rare.

One often reads about schizophrenic people hearing voices. Have you ever experienced hallucinations?

Yes, I have. One time I heard a song, it was a cover of the Beatles by The Flaming Lips… I don’t exactly remember which song it was, but there was talking and noises in the background of the recording and when I heard that, it just felt so real to me. It is hard to describe this feeling. I would say it felt like it was happening live and like the song was speaking to me. It caught me completely off guard and I became really emotional. [An ambulance with a switched on siren drives by]. If I were in an acute schizophrenic phase right now, I probably would interpret this siren as a signal or a personal message for me.

How did you get help and who made your diagnosis?

Originally, I went to the doctor to simply get a sick note for school as I was going through a phase of extreme schizophrenia at the time. When I hinted to the fact that something might be wrong with me, they transferred me somewhere else. They couldn’t help me and I felt like they were putting me off – it was terrible. Fortunately, I didn’t really understand what was going on at the time due to my symptoms and when I was finally sent to a doctor who could help me, I was much more interested in decoding the hidden messages his cat, which was straying around in the waiting room, had for me. I was supposed to directly go to the clinic in an ambulance from there, but that was much too fast for me. At least, I wanted to go home, collect some stuff and get a shower first.

I ended up staying in a psychiatric hospital for two weeks, and felt much better afterwards. Actually, I promised them to take care of outpatient therapy as soon as I got home, but I keep putting it off for some reason.

Studies hint to the connection between relapsing into schizophrenic phases and being undertreated. It is suggested that the probability to suffer from reoccurring episodes of schizophrenia rises without the support of medication. Have you ever received prescribed medication?

They put me on Abilify* during my stay in the clinic. Afterwards, I continued to take it for three months, but I felt like it didn’t help me at all. All I felt was strangely neutral, muted, and dull. As a countermeasure, I started to smoke a lot during that time to regain positive emotions – that worked quite well for me. In fact, there were many times when I literally felt euphoric. That’s when I started to talk myself into thinking that weed was a cure for my illness. At this point, my opinion on this subject has changed as my mood is also often negatively affected when I smoke.

Which symptoms affect you the most in your everyday life and how do you cope with them?

There are positive and negative symptoms of my schizophrenia. My condition often worsens when I am hungover and alone. Once I went to a pharmacy and tried to get some natural antidepressants, like Hypericum. Generally, I am not someone who withdraws from social contact when I am feeling low – I try to go out and do normal stuff.

I was told before to take care not to get involved in overwhelming situations or surround myself with people who might have a negative influence on me as I have a tendency to let myself go completely and end up in potentially dangerous situations. I shouldn’t lose myself in those situations too often – although I have to admit that it can be a lot of fun, for example when you are at a club, and you feel like you are in your own world, your zone, and start to make up stories, like “what if…”. But yes, of course there are negative situations and symptoms which might be caused by this behavior. One time when I was at a party I could feel myself relapsing into schizophrenic symptoms, and was just about to have a panic attack. At that moment I told myself to relax, breathe, and calm down.

How openly do you deal with your mental illness and with whom do you talk about it? Do your friends and family know about it? Does talking about it help?

Usually, I rarely talk about it. At school there is one person who also has a diagnosis. I can talk with him. And also with my aunt. She was also the one who told me to take a step back and breathe when I have the feeling that I am relapsing into schizophrenic thinking. There are some moments when I feel really uncomfortable with my illness – for example when I have done something I find ridiculous during a schizophrenic episode. I mostly don’t like to talk about those incidents. Anyways, I do not consider my schizophrenia a general taboo topic.

There are studies which reveal a causal link between high levels of creativity and schizophrenia. Can you agree?

Yes, definitely. My creativity helps me a lot to cope with my illness. In the clinic, there were many possibilities to express yourself creatively. At the moment, I try to invest as much time as possible in creative activities such as drawing or spraying. It helps me a lot to relax and to express my feelings.

How are you right now?

At the moment I am feeling okay, it’s Friday, the weekend is about to begin, and the sun is shining. Everything is fine.

*not his real name.

*Aripiprazole. An atypical antipsychotic drug approved to treat schizophrenia and bipolar disorder.