“I was told that demons are sitting in my body”: an interview on how to live with schizophrenia

Since the age of 12, Sasha Vasilek has been observed by a psychiatrist. She was in a mental hospital three times, and each of them was painful for her: the staff treated the children rudely, and the parents were intimidated by social care. Sasha was selected 20 times for a treatment regimen, and each time she faced serious side effects.

Now she paints pictures and maintains a blog where she tells people about life with a mental disorder. Let’s publish her story.

Sasha Vasilek

23 years old. Psychoactivist, blogger. Suffering from schizophrenia. Originally from Minsk.

My diagnosis is continuous paranoid schizophrenia. It is accompanied by hallucinations, delusional states, problems with the emotional sphere and intellect. Quite often, in patients with this diagnosis, logical connections are simplified, it becomes difficult for them to formulate speech smoothly and write without errors. But I was lucky: everything is fine with my thinking.

“Now we will write in the card that the child is sick because of you”

I had a very bad relationship with my classmates, because of which I had to change four schools. Each of them had problems: from mockery about the appearance – at 11 I decided to go goth and wear black – and ending with bullying, they say, they say, I am mentally retarded.

Because of this, it was difficult for me to communicate with children. There was a fear of school. When I began to have psychotic disorders, it became difficult to engage in conversation, listen to teachers and communicate with classmates. Because of this, the children laughed at me.

A little later, I began to see shadows out of the corner of my eye. At first, I did not pay attention to it, I attributed it to optical illusions. But then they became more distinct, began to appear right in front of me. It was very scary. I realized that something was wrong. A couple of days later, I experienced auditory hallucinations.

My mother and I decided to transfer me to home schooling. To do this, it was necessary to obtain a certificate from the psycho-neurological dispensary (PND). They told me they wouldn’t just give it to me. You need to go to a psychiatric hospital and be examined.

It was the children’s section. There were children of all ages – from one to 18 years old. There was no “packaging” according to the diagnoses and the severity of the disease. Children with depression and schizophrenia could lie in the same ward.

On the very first day of my hospitalization, I saw a nurse beating a little three-year-old boy with Down syndrome.

Later it turned out that this happens here every day.

The routine was as follows: we woke up at 8 in the morning, had breakfast, hung out somewhere in the corridor, and then went to the classroom, where we just sat on hard, uncomfortable chairs. Yes, it was impossible to be in the ward. And it doesn’t matter that we were given pills that made us want to sleep .

I tried to communicate with small children, because, in my opinion, it was harder for them: they were all alone here, without mom and dad. Gave them cookies and coloring books, chatted with them.

There was a case when I wanted to treat a boy from an orphanage with a cracker. I was told that for this they can stab both me and him. Why, why – did not explain. Now I understand that, most likely, they tried to protect him in this way – suddenly the child has diabetes or allergies. But why couldn’t it be explained properly?

In general, injection with drugs was their favorite method of punishment. Once I cried, and they gave me an injection of a strong tranquilizer. There was an overdose. I couldn’t walk, I fainted. And the medical staff thought it was funny, and they openly laughed at me.

There was a psychologist in the same hospital. I told him that I was very worried about my parents’ divorce. To which she issued: “You are a spoiled princess. You want everything in the world to be your way.” As far as I know, she still works there.

After a few days in this PND, I called my parents in tears, begging them to pick me up. When they arrived for the first time, they were quite politely explained that this was not the way to go. In the second, the mother made a scandal. The administration threatened the police and welfare. She was told: “Now we will write on the card that the child is sick because of you. You will be subject to checks. You need it? We can terminate your parental rights altogether.”

It was a big statement. I don’t know how feasible it is, but they really could write whatever they wanted into the map. And I stayed there for a month.

To check out, you had to pretend that everything is fine with you.

Smile constantly. Do not cry under any circumstances. Therefore, in the presence of orderlies, I held on, and then ran away silently sobbing into the toilet. It sounds crazy, but they had some kind of trigger for tears. The crying of even very young children – three-, five-year-olds – caused aggression.

I think the reasons for this attitude towards children may be an atmosphere of impunity, low wages and a well-established attitude in society towards mentally unhealthy people.

I especially noticed the difference in attitude when I heard the nurses discussing their daughters and sons – about the same age as most patients. But they spoke of them with warmth and respect. And about us – as if we are not children, not people, and not even animals, but some kind of inanimate objects that we do not feel sorry for.

“He chuckled and said that I“ read the Internet ””

In total, I had six psychiatrists: two in a children’s dispensary, two in an adult clinic, and two private ones. Many were completely unprofessional.

First, there was a complete lack of awareness of my illness. Although this is the most obvious – a person must know what to expect and how to deal with the problem.

Take at least what I found out about my diagnosis by accident. When I was 15, I went to a psychiatrist and looked at what was written on my card. There were numbers. I googled what they mean, and everything became clear to me. I don’t know why neither me nor my mother was told about it right away.

Although at the age of 11, with the onset of the first hallucinations, I myself asked the psychiatrist about it point-blank: “Do I have schizophrenia?” He chuckled and said that I “read a lot of the Internet”, that this is ” teenage “. A couple more years and everything will be fine.

Secondly, as soon as I was given a serious diagnosis, I faced discrimination. Any words I said at the reception were considered nonsense. The doctors listened to me with half an ear. Although I still have criticism and exacerbations happen only in certain periods.

My mother was offered to send me to a psycho-neurological boarding school. She got very angry and made a scandal. Being outside the door, I heard the arguments of the doctors: “It’s like a time bomb. Sooner or later she will be stunned. You don’t need it. You have to inject drugs. Put her in the hospital once every six months.

In theory, this happens. I don’t know what will happen to my psyche in 20 years, but then the doctors obviously exaggerated.

Thirdly, the treatment was terrible. Medications often didn’t work for me. Once, at the age of 14, I had a hormonal failure, milk came out of my chest.

My complaints were often ignored. I was prescribed outdated pills. For example, chlorpromazine is a hard drug. I warned that I was fainting from him and my blood pressure dropped critically. But in the psychiatric hospital it was all the same. I was injected with it.

In private clinics, too, not everything is smooth. Once I came to a famous psychiatrist. Admission cost 4000 rubles. She prescribed me antidepressants. I explained to her that when I take medication, I get panic attacks. She asked: maybe I should be like psychotherapy? She ignored my words.

After I started taking the pills, I started having convulsions, fainting, vomiting. In general, the worst nightmares. I tried to call the clinic to find out how I can get off these pills. Because abruptly stopping drinking them is harmful.

They froze me for a long time – they said that she could not come up and pick up the phone. I had to knock out her personal number through friends, write on What’s App that I felt so bad that because of this I had to call an ambulance. Then she finally told me how to reduce the dosage. This attitude for 4000 is unpleasant.

Over the course of my life, I have changed my pill regimen more than 20 times. That’s normal: symptoms can change, and I also have a bad reaction to antidepressants. Antipsychotics don’t work for me either.

Therefore, for 4–5 years I live without pills. My main method of treatment is psychotherapy . In most cases, people with schizophrenia are constantly on medication because they develop a schizotypal defect. That is, apathy begins, it becomes difficult for a person to serve himself. Tablets can stop it.

But I haven’t had any of these symptoms yet. Naturally, everything is tracked in dynamics. If one day I or my loved ones realize that I have become worse, I will have to use drugs and endure all their side effects. But it’s better than losing yourself and becoming disabled.

Tablets are not evil. They must be drunk if there is no other way out. As soon as I find a good therapy, suitable in all respects, I will use it.

“Voices in my head were screaming, ‘You’re a freak!'”

In the family, only my mother and cousin know about my diagnosis. The rest – aunts, uncles, grandmothers, dad – do not know.

I tell my friends about it openly. When I found out that I had schizophrenia, everyone reacted normally. I never felt rejected. I’ve heard other people’s stories many times about how everyone turned their backs on them. But I got lucky.

In addition, sometimes I behaved in such a way that it would be strange if I did not have any diagnosis.

There were tantrums. I could take off abruptly, trying to escape from the demons. Once I got lost in my area – I could not understand where I was, what kind of street it was. It felt like I was having a microstroke . Naturally, people understood that something was wrong with me.

And when I heard voices, I clamped my ears with force, trying to get rid of them. They could intervene in the dialogue, comment on the words of the interlocutor or my answers to him. They didn’t always provide meaningful information. Sometimes it was just an indistinct noise, consisting of illogically constructed phrases. When I was 14-17 years old, it was more difficult to cope with voices.

They might ask me: “Does the dress suit me? And this hair color? And the voices in my head were screaming, “You freak! Disgusting! Get away from her! Drop it right here!”

At such moments, I openly told people that I heard them, and also the voices in my head. They tried to translate it into a joke: “Cool, say hello.” And how else can you react?

Although once it happened that I asked my friends to come when I was very ill. Only one agreed. An hour before the meeting, her phone was unavailable. But then she did come. We had a great time. Everything was great until my mom came home from work and asked who I was talking to.

At that moment, I realized that I had actually been sitting in the room alone all this time. My friend didn’t come. And my psyche, trying to protect me from pain, sent me a hallucination. Then we talked to this friend. She came up with some kind of ridiculous excuse, and I minimized communication with her.

No matter how paradoxical it may sound, I most often encountered negativity and stereotypes about my diagnosis in a mental hospital. In group therapy, for example, I became friends with a girl. At some point, she asked me: “I’m here with anorexia, and you?” I said, “I have voices in my head.” She changed her face and said that she would not communicate with me.

Another time I was walking in circles in the hallway. Some kid was watching me, and then he asked: “Why are you doing this?” I answered him: “I have voices in my head. When I walk, they quiet down. He recoiled as if I had open-type tuberculosis. Sometimes people react like you’re going to infect them or stab them. It is unpleasant.

In general, I find it easy to make new friends. I am a social person. But I don’t always talk about my diagnosis right away. I don’t think illness defines me in any way. It should not look like “hello, I’m a schizophrenic.”

Now I am surrounded by creative , media people with whom I can freely discuss mental problems. In a conversation, I can mention that I have schizophrenia. People react to it normally.

“Yes, she doesn’t have any shiz, she’s just hysterical”

I have little experience in building romantic relationships. I met with two partners, and they both supported me. The disease developed under an ex-girlfriend. She went with me to psychiatrists, visited me in the department. I remember we sat on the bed and hugged. Everything looked like it was my friend. But the doctors somehow figured it out.

They told me: “If you sit with her again in an embrace, then we will close your visit.”

So then we were just next to each other without physical contact. Fortunately, I was not offered conversion therapy , which is often used to circumvent the law. As far as I know, it is practiced in some hospitals.

Schizophrenia, by the way, does not affect orientation, sex and sexuality. During intercourse, you are too focused on the process and physical sensations. Voices, even if they exist, are muffled.

However, I have a co-occurring post-traumatic disorder – here it affects sexuality. It causes stress, can lead to hallucinations – and on topics that are painful for me. This combo hits hard.

My second relationship was with a subscriber. He knew about my features, and the fact that I have schizophrenia was not news to him.

I came to live with him, but in the end we decided to move in together. Found a rented apartment. The contract was drawn up in his name, but there was a strange clause: “Confirm that you are not registered with the PND or narcology.” This was not the case in other apartments. But I thought: “Okay, the guy is healthy and is not listed anywhere.”

However, at some point, the landlord found out that I was a blogger. She began to call me and ask me to throw off the page. I had to do it. In less than a couple of hours, she said: “Unfortunately, tomorrow relatives from Murmansk are coming to us, they need to live somewhere. Move out.”

When the guy came to pick up the deposit, she said: “You should have read the contract more carefully. We don’t let them in here.” We were 19 then, we didn’t know it was illegal. Now the young man could sue.

First, the blog is not, in fact, proof. I could post anything. Secondly, the concept of “accounting” has not existed in Belarus since the 1990s; this is an invalid clause. Thirdly, the contract was not drawn up for me.

We later broke up with the guy, but not on the basis of illness. Although there was one case that really hurt me. We quarreled, and he began to write to my best friend: “Yes, she doesn’t have any shiz, she’s just hysterical.”

And this was said by a person who personally saw all the symptoms, all the references! He constantly watched me suffer and try to heal. Of course, he did it to annoy. Yes, I also behaved badly in that situation, but it was very painful.

Building a relationship with a person with schizophrenia is difficult. I wouldn’t pull.

In exacerbation, he can be hysterical or apathetic. To prove to you that you are an enemy, a demon, Stalin. You always have to be ready to call an ambulance and dump your loved one in a mental hospital. Perhaps for a long time – for a year, for example.

Many romanticize such relationships – this is a big mistake. When someone says: “I have trouble with my head, it’s difficult with me,” people take it as a challenge: “No! I will heal you with my love.” And then they encounter everyday life – when a partner sits and eats whitewash, shits in a corner, leaves for Baikal with the last money … This is not a damn thing romantic.

Once I was running around the area from my boyfriend in a bathrobe. I don’t remember why, but I got really pissed off. While he was catching me, he met all the neighbors: “Yes, hello, sorry.”

It was such that I threw off all my money to people and remained with zero on the card. Once I threw my passport out the window. And in the fall, she moved to Moscow altogether and rented a room for a lot of money together with some adult man who walked around the apartment in shorts. Normally, I would never do this. I do not remember what I was guided by then. After spending the night in this apartment for one night, I moved out.

It happens that in moments of exacerbation you abruptly let go, and you sit and think how inappropriately you behaved.

My relatives know when my exacerbation begins. They can notice it themselves: I behave strangely, I do meaningless actions. I always warn people: “If I throw my passport out the window or buy a six-meter snake, please turn me into a fool.”

“We will inform the university about your diagnosis, and you will be expelled”

I wanted to enter a Belarusian university in psychology. When I said this at one of the appointments with a psychiatrist, they began to threaten me: “We won’t allow it. Even if you do, we will notify the university about your diagnosis, and you will be expelled. If you want, go work as a librarian.”

I don’t think it’s legal, but what was stopping them? I didn’t want to get involved in this story.

I think I would have coped with the profession of a psychologist . Of course, I would consult only if there was a stable remission and PTSD was worked out. On the blog, I deal with psychoactivism – this, of course, is not the same thing, but I already have a fairly large knowledge base in my specialty.

Perhaps I will go to school in Russia, and then I will advise people, but not a fact. From the stories of subscribers, I know that there were also cases here when students were expelled because of their mental status. This, of course, is very sad.

Having escaped from Belarus to Russia, I began to look for ways to earn money from home. So now my main income I get from the blog. Four months ago I started painting. I am interested in depicting my hallucinations – for example, heaven or hell, which came to me in visions. These paintings are for sale.

“Please Believe It Silently”

At first, I just posted beautiful pictures on social networks. But then, when I was admitted to a mental hospital for the second time, I decided to blog like a diary. I didn’t really think about how many subscribers I have. But people began to catch up. For them, it was something new – no one did anything like that then. I noticed this and began to develop in the direction of psychoactivism, raising topics that were important to me.

At first, it was difficult to accept negative comments about yourself, but over time, resilience develops. You think: “Well, figs with him!” Psychological adaptation.

The only thing that annoys me is people who write that schizophrenia and other mental disorders are not diseases, but settlers, entities and demons. And in order to be cured, you need to go to priests and fortune-tellers, and not to psychotherapy.

After they told me that demons were sitting in my body and advised me to drink a decoction of onions in order to exorcise them, I am no longer surprised at anything.

Such rhetoric is dangerous, especially if it is addressed to sick people. I don’t believe in it. But some of my readers can really break loose and go to the mountains to the priests. Then, at best, a protracted psychosis awaits them, at worst, suicide or accidental death from rash acts. When I see such comments, I always get angry: “Please believe it silently.”

When I started the blog, I wanted to convey a few important ideas:

1. Talk about mental disorders as much as possible. It is then that we, our children or grandchildren, will slowly cope with stigmatization. People will not be afraid to come to a psychiatrist and will be able to identify dangerous diseases at an earlier stage. By my example, I show that it is possible and necessary to talk about troubles with your head. You shouldn’t be ashamed of them. It’s just a mental trait.

2. Words like “crazy”, “crazy” are taboo. Yes, in my profile description it says: “Shizichka”. But this is self-irony. A person can call himself whatever he wants. Another thing is when these words are used as insults. Just because you don’t like someone doesn’t mean they have mental problems. And for people who do have disorders, it is better to clarify which terms are comfortable for them. Don’t be afraid to ask directly: “Can I talk to you about this?” Ask them to list topics or phrases that could be triggers.

3. Do not immediately be offended by a neuro-atypical person if he suddenly moved away and began to behave strangely. Not the fact that he is an asshole and he does not care about you. It is possible that he began to exacerbate and he has no power over himself. It’s a disease.

4. No need to show unsolicited pity and try to impose help. If a person wants to be sympathized with, he will say so. If he needs your advice, he will ask for it.

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