What a relief to take off the mask and share your mental health problem

Interview with Mateusz Biernat, President of the Human Foundation, Poland

Katarzyna Siwiec: Schizo-celebrity! If I was to write a book about you it would be a perfect title.

Mateusz Biernat: I do not know if such a word exists. I assume you are referring to Anna Dymna’s TV talk show “Let’s meet” to which I once got invited as a guest.

It seems unusual to me that you talk about your mental ill health so freely. You show your face and do not change your name.

Well, nowadays coming-outs are trendy.

Sure, but not in this context.

You believe mental ill health is a taboo topic, don’t you? That it is better not to come out?

I have been also referring to “onco-celebrity”, the nickname given to the late priest Jan Kaczkowski. He did not take offence.

Am I acting offended? I am glad that you can see a potential in what I do.

When did it all begin?

I was a student at the University of Physical Education in Krakow. I practised competitive rowing and I played basketball. Yet in the middle of a module, I quit studying in order to work at a hip café. That was my first adult confrontation with the world. I was 20 years old. It is the period in life when you try to find your social identity. And I failed.

What about the unrequited love story? I read in one of your interviews that it hurt much.

Indeed, a lot was happening in my emotional life those days. I was overworking but it did not help. I started losing my sense of meaning in life. When you lose it the crisis comes. I got lost, as if I were in a big, unknown city. I did not know who I was, what I was doing or where I should aim for. If you have no one to lean on, if you have not learned how to cope with stress, breakup and failure… simply speaking, if you cannot control your emotions you are prone to pain and enormous suffering. You need a compass in life. You need to believe in certain values which will guide you. Otherwise everything falls through.

You did drugs?

Of course, I did. But first it was alcohol that became an inseparable part of my career as a waiter and bartender. I drank a sea of alcohol. Then I added amphetamine, marihuana and other things to the mixture. I went on such amphetamine benders that I did not remember my name at times. Over the course of two years I took about 17 thousand pills of an old generation neuroleptic. In those days, 20 diazepam pills usually went with one beer. Each subsequent hospitalisation made my situation worse because it increased my sense of social exclusion. Every day I took handfuls of pills because I felt like garbage. I considered myself completely useless and dispensable. A wise man (was it Antoni Kępiński?) once rightly observed that social death is almost the same as a biological one. I personally experienced it as true. Now I realise that I was actually committing suicide those days. But the truth is I did want to live and experience the world so I needed to numb my negative thinking about the world, myself and meaninglessness of my life. Only after the drugs, after amphetamine, I was able to read books (and I read loads!) or play computer games. Then I began to write a little. I felt like I was falling apart, going down like on an inclined plane. When I broke my head (see, I have got this scar left!) and shouted that I was Satan, I got to the detoxification ward of the Józef Babiński psychiatric hospital in Krakow. I spent a month there. Compared to what I saw there a dozen years ago the current living conditions at the ward are luxurious.

Was it that bad?

Yes, it was! A mosaic of people and their dramas. At a certain point I felt I needed to desensitise, and my head started producing content I was more and more afraid of. Fortunately, I managed to keep some critical perspective and I did not really believe what went on in my head was true. However, one day it all blew up and I began to cry. I was literally howling. I tried to put my experiences in words and – thanks to a wise doctor who listened – I came to an observational psychiatric ward. Some people only then realised that my problem was not only alcohol addiction but also something more. And that I did not try to escape universal conscription but that I needed help. Immediately.

What was the diagnosis?

Is it so important? This is exactly the attitude I would like to change eventually. It is so easy to label or pigeonhole a person, to prescribe them medicines which will make them totally numb and in the long run exclude them completely from social life! I want to build a space for dialogue about that because a missed diagnosis can influence one’s entire life.

Can it be different?

Yes, it can. It is enough to correctly tell a mental health crisis from a lived experience. So, can you put the phrase “mentally ill” in inverted commas?

Sure.

When a young person looks for their identity it can be a rough process. Sometimes it happens to be so terrifying that the young adults try to desensitise themselves with drugs, alcohol or stimulants. Maybe what I experienced was the process of becoming a human being? The great psychiatrist and humanist Antoni Kępiński would probably agree with this. But perhaps I should first tell you about my experiences. I was hospitalised eight times and it took eight years of my life. A sea of lost time and ten thousands of obediently swallowed pills. Medication that makes you sleep and feel indifferent towards the world. Pills that damage your brain. During one of my hospital stays I slept for three weeks and I missed the World Trade Centre attack. When I woke up, I saw my mom’s face, her eyes full of tears. Well, I thought, not so long ago, her 21-year-old son was a student, took part in a national championship and now he barely gets up from his bed. A vegetable. Delusional psychosis with a depressive-anxiety component. That was the first diagnosis. I had no idea what it meant, and I thought I would leave the hospital and things would somehow work out.

Were those eight years a complete loss of time?

When I think about creating my opportunities and looking for my place in society, then yes, the years have been lost. Yet at the same time, I got a great lesson of experience.

You experienced a real trauma at one of the psychiatric wards.

I shared a room with a man recently released from restraint belts. It is a way of pacifying a person before the drugs start working.

Restraint belts?

Straitjackets with the long sleeves tied on a person’s back are no longer used. You can see one of them at the “Mind your head” exhibition, which has been organised by the persons who stay at the Babiński hospital in Krakow. Fortunately, modern psychiatry uses the “pharmacological straitjackets”, that is a specific set of drugs, primarily benzodiazepines. However, before they start working, in some cases it is necessary to use the restraint belts anyway. The man was behaving aggressively. He had a mental health crisis. He stood in front of the door and talked stuff about Satan who allegedly would make him do something terrible.

What were you afraid of? After all, you were at the hospital!

There was only the two of us in the room, no nurse, doctor, psychologist, or even another person. And I was 20 years old. Bars on the window behind my back. I was really trembling for my life. I came to the ward voluntarily. I wanted to be treated and it turned out I had to assess my chances of surviving. Decide whether to hide under my bed or to push my miserable roommate away and try to run. It was 10 to 15 minutes of sheer panic.

How did it end?   

Someone noticed that the man had a mental health crisis and they gave him a shot in his leg. Then they put him back in the restraint belts. He started to scream tremendously and I can hear the scream until today. It gives value to what I do now.

What do you do now?  

I fight against the stigmatisation of the “mentally ill”. They do not run around with an axe or knife and attack whoever appears on their way. They are much more sensitive than the “normal” people, they feel more intensely and fear more than the others. Research shows that almost one out of four people in Poland will experience a mental health crisis in their life. Therefore, I believe my actions are worth doing. I also stand up against self-stigmatisation. It means identification with the image of mental ill health that society imposes on us. It is a source of stress for people because it is very hard to accept the lack of acceptance.

But the man in the hospital could have strangled you to death.

Yes, he could have done that. But that was due to a failure in the treatment. We need to learn a lot as a society.

You do not have to do all of that. In your case hospitalisation is a thing of the past. You have not taken medications for a number of years now. 

Yes, but I care for the good of the persons experiencing mental ill health because I used to be one of them. It is possible to save people from a lot of drama and to shorten their pathway towards recovery. I know what it feels like when you walk out of the hospital with a horrible stigma of the mental ill health which raises fear and panic among most people.

How does it feel?

It is much worse than at the hospital ward. At first, there is some enthusiasm. One may think “I will continue studying, I will find a job”, but in my case the enthusiasm usually turned down to depression within two or three weeks. Outside the hospital, you realise at once that on this “normal” side of the world you are just not wanted. People at the hospital are authentic. What they feel is clearly visible. I was unable to adjust to the outside reality so like many others I went back to the ward several times. Paradoxically, I felt safe there. It was a real asylum to me. I lacked support and psychoeducation. Back then, everything in medicine, also in psychiatry, was based on biology. Doctors talked about neurotransmitters. And I needed someone to take interest in me. I longed for understanding and kindness of another human being, some interpersonal activities, not just the pills meant to tame the neurotransmitters raging in my brain. If you trust only biology you can deal at most with surgery. Humans are something more than biology, don’t you think? My family and I did not understand what was happening to me and no one even tried to explain it to us.

Mental ill health is not a flu. It still raises anxiety…  

This anxiety is effectively escalated by the media which from time to time present us with a story about another psychiatrically treated madman who committed a terrible deed. This attitude makes the stigmatisation of persons who were in an institution even worse. Society does not accept them, although thanks to medications and proper attitude of “the normal” they could function quite well. When I got out of the hospital, I sent my CV everywhere and no one answered. Due to the psychiatric diagnosis I was unable to get even a dishwashing job. I was doomed to be socially banished. Like a criminal who no one can trust. Research shows that the situation of persons who were in an institution is even worse than the position of former prisoners, as far as social exclusion is concerned.

But in the end, you became successful. You think about writing a PhD dissertation, though after leaving the hospital you cleaned the streets. What is more, you started a family and you have got a daughter. You have become a different Mateusz Biernat, a man of great social sensitivity and outstanding intelligence. Despite the whole mixture of drugs and alcohol. What a metamorphosis! What was it that inspired you to such a change?

Many of my friends with similar experiences collapsed, lost hope, faith, or even life. I was lucky but I also worked very hard for a long time. I cannot find words to describe how much I owe to my close friends and family. My wife and daughter are priceless motivators. I have to be responsible. My wife does not treat me like a patient but like a human being.

You do not forget about the “mentally ill”.

In 2017, as someone who used to be in an institution, I took part in the Mental Health Congress that debated on the condition of the Polish psychiatry. It was a breakthrough. Before that, what helped me in getting out of the dead end was a stay at the addiction treatment centre “Familia” in Gliwice, where I spent a year at the closed ward, and the collaboration with Anna Dymna’s Foundation. “Familia” is a facility for people with a double diagnosis: a mental health problem coexisting with a drug, alcohol or other addiction. I was offered a job there so for some time I worked as an addiction therapy instructor and I ran a theatre section (I assume someone noticed my talent in the field). Yet I left them and came to Krakow which was actually against the rules of therapy because I came back to my former environment. Then I met my wife on a dating website. It was her who got me the cleaner’s job. I swept the streets, cleared them of snow, put things in order and slowly came back to a normal life. They told me I was a good worker. Then I started working for Anna Dymna’s Foundation as an occupational therapist. I ran an arts studio and organised exhibitions of the Foundation’s beneficiary work. It was there, in the “Sun Valley” centre in Radwanowice where I realized how important the community is that believes in a person. Everyone deserves a chance. And the conditions are what shape us. We are like plants that need to be looked after and grow in proper soil to be able to flourish. In 2013 I started studying special education and Anna Dymna invited me to her show. I was like: What? Me, a person with mental ill health, not so long ago a affected by substance abuse, lost and out of track, was to present myself in front of all citizens of Poland? Tell them what it was like to be a person who was in an institution? Lying on an extra bed in the hospital corridor? One cannot sink lower than that. I was married at the time. I was the father of my baby daughter. I thought people would point their fingers at my women.

But you were brave enough to try!

You have no idea what a relief it was! Taking off the mask – the facade, behind which I had hidden and showing my real self to the world! When you publicly share you have mental health problems it no longer makes sense to offend you by calling you names. After all, you said it yourself, so the veil went down eventually.

How did your friends and family react?

The reactions were amazingly positive. Today I do not experience stigmatisation in my community. A great number of people are affected by the mental health problems I experienced. But there is another problem. As I am recognisable, I publish papers and take part in academic conferences, I can feel some people’s reservation toward myself. They perceive me as a curiosity because I was treated in a mental hospital. In some circles it still excludes a person, the same as being a former prisoner. But I learned a lot through the years and I consider myself a valuable person. I believe I shape myself as a human being. I will tell you one more thing. Today when I read my hospital discharge papers, all the subsequent diagnoses, I am more and more amazed and cannot stop thinking about it.

Why?

I wonder how to correct it all so that I could offer opportunities to other people in similar situations. One could write a thick textbook in psychiatry based on my diagnoses (the entire history of my illness is 300 pages long). The psychiatric labels do not match with what I felt and what was happening to me at the time. I can see a huge gap between those two realms. My final diagnosis was paranoid schizophrenia. A complete misunderstanding! Now I do not take any medicines. So what? Have I recovered? Or did someone misdiagnose me?

You are saying there is something wrong with Polish psychiatry.

Nowadays, it is fortunately going through transition. Oncology or surgery are based on a range of scientific research. And what about psychiatry? It is still too easy to label a person with a diagnosis which can ruin their entire life. We have too much confidence in labels. Do we even know what a properly built human brain should look like? Or what a proper functioning of neurotransmitters is? There is no such model of the human brain like the prototype of the kilogram from Sèvres, near Paris. As humans we are different and the diversity stands for the richness of our kind. Let us learn tolerance. Another important thought: when someone gets a heart attack or a stroke, every minute counts. They talk about a golden hour, a period of time during which a person can be saved. When it comes to a mental health crisis it is different. The mental health problem has much time to develop, evolve, become a schizophrenia, bipolar disorder, depression, or any other condition described thoroughly in textbooks. But if help comes within the first 24 hours following the crisis the scenario can be completely different. Therefore, some modern-thinking psychiatrists do not label disorders or illnesses. They talk simply about the mental health crisis.

Are the voices that an alleged schizophrenic hears in their head also the result of a crisis?  

They can be. There are studies showing that some people, while experiencing traumatic events, have a multitude of various voices – metaphors, hallucinations and delusions in their head – which they perceive as a strange force from the outside. A force that seems to steer them.

What is the Open Dialogue that you mention so often in your speeches?

It is an early intervention during a mental health crisis. It was developed by a Finnish psychiatrist and therapist Jaakko Seikkula in the1980s. He recently visited Poland. He claims it is necessary to create conditions in which a person who experiences the crisis can open up as soon as possible. They need to externalise and shout out all their mental pain which is said to be much worse than the physical one. In practice, the Open Dialogue Approach works as follows: A team, the members of which can be a doctor, a nurse, and a psychologist, come to the person in crisis and the confrontation takes place in the person’s nearest environment, among their family members. It is about discovering something that has probably never been spoken out loud in the family. This way, we open a space for dialogue. If help comes soon enough the mental health problem can be easier to control, even if it does not allow the person to forget about it completely. Thanks to this approach in Finland, the number of hospitalisations due to schizophrenia decreased by 90%. Patients there take less neuroleptics. But help needs to come within 24 hours. It is the same with the victims of natural disasters. If a person loses all their belongings due to an earthquake or a flood for instance and they do not get help soon enough, then – instead of rolling up their sleeves and trying to fix the damages – they become numb and hollow.

Can you define a perfect psychiatrist?

The one who can abandon their expert role and believes in the person. Understanding and tolerant. I guess Antoni Kępiński was like that. He believed that a person can be helped. He gave them (usually someone with a low self-esteem) a glimpse of hope and a reason to believe in recovery.

You train Recovery Assistants. Who are they?

It is a new profession. An idea borrowed from Anglo-Saxon countries where persons in an institution create self-help groups, similar to those organised by the Alcoholics Anonymous. Recovery Assistants accompany people during the process of recovering from a mental health crisis. They become their guides. They are not psychiatrists or psychologists but persons who support others in coming back to their social roles. They know best what a challenge it is because they have experienced the same in the past. Once they were on the other, “worse” side, and they lived through the difficult experience of getting back to society after a crisis.

You have achieved quite a lot for a person once locked up in a mental hospital: you graduated from a university, you started a family and you plan to write a PhD dissertation.

Everything I do, I do because I want to give opportunities to other people like me and to save all those other Matthews, Martins, Peters – to give them hope. I would like for each of them to go their own ways. My mom says that thanks to my trauma, symbolically referred to as a cuckoo’s nest, I am who I am now.

Perhaps all those lost years were not so much in vain?

Perhaps…