According to the World Health Organization, approximately 24 million people worldwide with schizophrenia . Only a third of them receive specialized care. In addition to treatment, patients need support and care from their loved ones. We talked to three heroines whose relatives have encountered the disease. They agreed to anonymously tell us how schizophrenia actually progresses and what feelings the diagnosis of a loved one evoked.
We prepared this article together with the pharmaceutical company Gedeon Richter. It recently released an online publication, Schizophrenia as it is. A book for those who are nearby . From it you can learn how to cope with everyday difficulties, where to look for verified information and how to take care of yourself if a loved one is sick.
“Mental disorders are perceived by society as stupidity”
My daughter did not have acute manifestations of schizophrenia. Bad mood, lack of empathy, irritability, drowsiness – with such symptoms, specialists diagnosed her with depression for a long time. Sometimes my daughter said that she heard some voices, but I was sure that these were ordinary internal dialogues of a person with himself. I learned about the diagnosis about a year ago – she casually mentioned it at a pre-New Year meeting. I could not believe it and thought it was a mistake.
For a while, we didn’t even touch on the subject of the disease, as if if we didn’t talk about the problem, it would go away. When I realized that my child really did have schizophrenia, I scoured the entire Internet. I really wanted to find information on how people with the diagnosis cope with the routine and what to expect next. But almost all the texts I came across looked like reprints from Wikipedia and were of little help. So I’m just learning to push aside my anxiety for my daughter and solve problems as they arise.
I don’t talk about schizophrenia with friends or even relatives. Any other illnesses evoke sympathy, but mental disorders are perceived by society as nonsense, whim and “oh, I made this up myself”. I don’t want to waste energy on breaking someone’s stereotypes. Although, if you have the moral resources, it’s worth doing.
I constantly feel alone with the problem. Sometimes I feel helpless because I can’t change anything. I think it’s important for those who care for relatives with schizophrenia to find someone to talk to, “to cuddle with” and share their pain. By the way, my daughter talks about her diagnosis quite openly in a small blog. It helps her.
I would like to be with my daughter all the time, monitor her condition, check how she eats and whether she sleeps enough. I understand that if we lived together, I would babysit her. Sometimes it is scary when I cannot get through to my child. But I understand that it will never be possible to get rid of anxiety. My daughter is an adult who must make independent decisions. She is a fighter, and I am very proud of her.
Schizophrenia can progress in different ways. To separate reality from stereotypes, it is worth turning to trusted sources of information. The online publication ” Schizophrenia as it is. A book for those who are nearby ” in a simple and accessible form explains what the disease is, how it is treated and what symptoms can appear during periods of exacerbation. It also answers many practical questions. For example, how to organize everyday life in a new way and what to do if a loved one refuses treatment. The book is based on scientific research that concerns various aspects of the disease.
“You shouldn’t devalue your experience and turn away from someone close to you”
I had always suspected that my father was sick with something, but I didn’t think it was schizophrenia. Probably because his case didn’t look like the usual picture of the disease: with visions and voices in the head. I learned the truth recently when I asked my mother for his official diagnosis.
In my early childhood, I was barely aware of what was happening, and my father had not yet suffered much from illness. He was quite independent in everyday life. The problem was different: he constantly forgot what he needed to do, buy, bring or take away. He lost money and looked for those who “stole” it. He repeated the same phrases. Sometimes, in his emotions, he broke things – they had to be repaired or thrown away.
Time passed and the situation became worse. My father drank alcohol, which made him more aggressive and hostile. He developed memory lapses and manic control. The disease progressed rapidly against the background of alcohol, but he did not want to be treated. Perhaps if he had turned to a specialist, everything would have been better.
We stopped living together, but I was still interested in understanding what was going on in the head of my loved one. I looked for information about schizophrenia on the Internet, from friends and mental health specialists. By the way, I believe that many people whose relatives have faced the diagnosis would benefit from talking to a psychologist. This will help build personal boundaries to resist stereotypes in society and teach you how to support yourself in difficult times. Ultimately, it will be possible to accumulate the moral resources needed to help your loved one.
The topic of schizophrenia is hushed up, and sometimes it seems that having a relative with the disease should even be hidden as something shameful. But you shouldn’t devalue your experience. I told a lot of people about my father. Sometimes we even joked in conversations, but only with those people who definitely wouldn’t judge.
If your relative has schizophrenia, do not turn away from them. Try to support and be understanding. Most of those who have encountered the disease are not evil by nature and sincerely want to get better.
“I try to be happy that my grandmother recognized me and called me by name”
My grandmother suffers from schizophrenia. My mother always took her illness very hard and told me about the diagnosis only when I was a teenager. By that time, my grandmother was living in a boarding school. I wanted to communicate and visit her, so I collected information and talked to specialists. At the stage of “getting to know” the disease, forums where relatives of people who have faced the diagnosis communicate were a great help. I read their stories, tried to understand how schizophrenia progresses differently.
Of course, there were people around me who tried to shame me somehow, hinting at bad heredity. It was hard to visit my grandmother alone, especially at first. Then I told my best friend about the situation. I explained to her what kind of disorder it was and how important meetings with a loved one were for me. My friend understood everything and even went to the boarding school with me for some time.
My grandmother was always kind, hard-working, and helped us with everything. I remember how, as a child, she cooked the most delicious soup for me. She is not guilty of anything, and it hurts me that a dear person ended up in such a situation. Her diagnosis made me understand that no one is immune from mental disorders. Now I try to accept her as she is.
My mother had a hard time with my grandmother’s illness. Looking at her, I understand that it is important for people who care for loved ones with schizophrenia or simply painfully experience their diagnosis to seek help. If necessary, visit a psychologist. This will help you understand that you are not to blame for the situation. We recently visited my grandmother. I see how she is weakening – age and illness are taking their toll. But I try to enjoy the little things. Every touch, every conversation. The fact that she recognized me and called me by name! Such moments show well that life is different and not always fair. But we only have one.
Schizophrenia be cured completely, but with proper therapy there is a chance to achieve long-term remission: work, make friends and build relationships. Therefore, it is important for loved ones not to lose touch with the person and convince them of the need for treatment. Literature created specifically for those whose relatives have faced the diagnosis will help with this. The online publication ” Schizophrenia as it is. A book for those who are nearby ” covers topics that help you understand not only the medical aspect of the disease, but also the emotional one. How to resist stereotypes, where to go for support and what to do if it is difficult to come to terms with your feelings – you will find answers to these and other questions on the pages of the book.