Schizophrenia: "We deserve happiness too!"

Hello AGBEHONOU, you have agreed to talk to Carenity and we thank you for that!

First of all, could you tell us more about yourself?  

Hello, my name is AGBEHONOU, I am 21 years old, schizophrenic and Togolese. I am single, I like to write poetry and I live with my parents.

How and when did the illness manifest itself in your life? What were the first manifestations? What was your state of mind at that time?

I was eighteen years old when the disease first manifested itself, long before that I had some discomfort and anxiety. After that, my delusions came on, I was afraid of everyone, even children and dogs but before that I didn't feel anything like that. Then came the auditory hallucinations that day I was at the university and I had the impression that my life was being bugged, my thoughts and even my actions. I could hear the students whispering to each other, at first it was difficult for me to listen to them (it was only an impression) but, with time the whispers of those around me became clearer and more audible. Some of them commented on my clothing, others on my private life and others answered me when I thought they did. A few days later, I dropped out of university, thinking that this was the source of what was happening to me.  

Alas! I was wrong on all counts, it was now the turn of those around me in my neighbourhood, at home and even in the street. They insulted me, called me names, I hated everything in life.  

Then there were the audiovisual hallucinations (I saw plots against me, I saw flies surrounding me, blood on my pillow when I woke up which disappeared in a few seconds), olfactory hallucinations (I smelled rotten things all around me) and kinaesthetic hallucinations (I felt the electric current in my body, when I picked up an object, it shook). The stress was crippling me and then came the depression.  

I felt lost, I didn't understand what was happening to me and I wanted it to stop.

What led you to seek help for schizophrenia? How was the diagnosis made? How long did it take to be diagnosed? How were you told and how did you feel when you were told?  

What prompted me to get checked was when the voices I was hearing started to imply that all the governments of the world, including all the religions, wanted me dead because of crimes (that I had not committed by the way) and I started to feel the presence of undercover agents everywhere.  

When I heard conspiracy terrorists sharpening their blades to offer me as a holocaust after cutting my head off, that's when I got the fear of my life.

I had not decided to go to the doctors for a diagnosis of the disease (which I didn't even know I had), but rather, to have a psychologist hypnotise me and bring out "everything I've done". That way, if I had committed a crime, I would know it and could in all humility ask for penance in front of the world.  

But, it was a real relief when the doctor examined me (he asked me a lot of questions) and said after 45 minutes: no one is going to hurt you (by the way, for me, the doctor was a butcher who was ready to torture me), I didn't believe him too much, but it was a bit of relief. I was about to struggle and run away from the hospital when a brave man grabbed me and the doctor said: for the moment you can't understand us, but later you will (I had just been injected with something I thought was drugs), after that I slept like a baby and when I woke up the voices calmed down.

Are you being treated and monitored? If so, what is your treatment and psychological follow-up? Overall, could you tell us about your treatment pathway? Is it effective in your opinion?

I am treated and monitored, risperidone, laroxyl, melex, and I have haldol injections. At first it was every month, but now it's every two months.

I am undergoing cognitive and behavioural therapy to help me adapt perfectly to society, despite my feelings. Before the injections I had three relapses apart from the very first one. Now I'm off melex and laroxyl, and only on the injections and risperidone.

I can't say it's effective as the word itself says, but it has helped me a lot. Today I am still working on my stress and depression.

What are the symptoms of schizophrenia in everyday life? What is the impact of the illness on your private and/or professional life? What are the difficulties encountered in everyday life related to the illness?

The symptoms of schizophrenia in everyday life are often: the desire to do nothing (which is often mistaken for laziness, but it is by no means the case), depression, stress, anxiety and impressions (even after an attack, you have impressions sometimes and these impressions give you that fear of having an attack again).

I started to lose interest in things I used to like, I couldn't concentrate for very long. I was more comfortable at home than elsewhere.

How do the people around you view the disease? Are you supported? Do you feel free and comfortable to talk about it?  

My family believes that this disease is nothing and that since I am a man I could overcome it easily and that it is nothing serious. If only God could make them spend 24 hours in my skin, they would know that it is really not easy for a man to face this disease. Even though my family is paying for my medication, what I want more than anything is their moral support. I don't feel comfortable talking about it.

Outside your circle, do you sometimes feel judged by people? How do you think they view schizophrenia? What is your attitude towards it?  

Sometimes I feel that people judge me with a look of suspicion and contempt. My own family doesn't know about this illness (except my brother) so they think I'm incapable. Even the people around me don't know about schizophrenia, most of them anyway.

I am frustrated, but I couldn't judge them. They don't know, but this disease kills.

What do you think about the representation of schizophrenia in films, series, books...? Do you have any examples of "clichés" that you might have noticed? How much are they exaggerated?  

What we are shown in films and crime series is very disappointing, mythical and counterfeit. It is totally contrary to the disease. They exaggerate by portraying schizophrenics as serial killers.

In what way(s) would you like to see the illness represented to the general public in order to change the collective perception?  

I would very much like to see schizophrenics treated as sufferers instead of being treated as those who make society suffer.

Are you confident about the future? Do you have any particular plans?  

Despite my illness, I am optimistic about the future and I believe that this is how all schizophrenics should behave, even if it is difficult.  

I don't have any particular plans at the moment, but I think that will come with time, there's no rush.

Finally, what advice would you like to give to Carenity members who also suffer from schizophrenia?  

I would like to say to all those who suffer from this illness not to give up, whether they are supported or not. But especially for those who are supported, know that this is a real gift from heaven. 

I will continue to say it, we deserve happiness too! It is not easy at all. To do this, you have to make friends, it's very important. And don't hesitate to communicate in the discussion groups, it could help you a lot, the fact of exchanging with people who, like you, are affected by the disease.

Any last words?  

To close this testimony, I would like to thank the Carenity team for everything they do for us every day. It's not easy, it takes strength. Only a just God will repay you. Thank you again.

A big thank you to AGBEHONOU for his testimony!    

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