How adolescents with diabetes live in Kazakhstan
Nail Zakiyev has diabetes and helps other teenagers accept their diagnoses by using the ‘UNICEF Practical Guidance for Children and Teens Living with HIV and Diabetes’
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The number of people living with diabetes in Kazakhstan has doubled in the past 10 years, with over 439,327 individuals currently diagnosed, including 5,132 children. Despite living with type 1 diabetes for the past decade, 19-year-old Nail Zakiev plays sports, attends university, and involves himself in social activities.
“I found out I had diabetes when I was 9, on my dad’s birthday. I went to my grandma’s house in the countryside after the celebration and ate too many unwashed berries and fruits. I started feeling sick, and they called the district doctor and an ambulance. My sugar was at 29, so I was rushed to the hospital. I woke up a week later in the ICU and couldn’t feel my legs,” says Nail.
“When I was told I had diabetes, I was confused because I had never heard of this condition before."
A few days later, doctors informed Nail about his diagnosis after measuring his sugar levels again. Nail’s grandmother stayed by his side providing moral support, as he was feeling weak.
“When I was told I had diabetes, I was confused because I had never heard of this condition before. People would ask me from time to time if I had gotten used to my diagnosis, but it took me a long time to adjust to it. There was even a period when I considered myself disabled,” recalls Nail.
Nail recalls that everyone already knew about his diagnosis when he returned to school after being in the hospital, as his mother had informed everyone. His classmates began to mock him, hitting him in the bathroom, throwing water on him, and even chasing him out of the classroom when he needed to take insulin injections. Nail became reluctant to go to school and started asking to stay home more and more often.
“Many of my teachers thought I was taking advantage of my diagnosis. I often had to skip school due to my condition, but they thought I was making it all up.”
“Once when I felt sick in the classroom my teacher told me to leave the room, saying that if I wanted to die, I had to choose another place. Many of my teachers thought I was taking advantage of my diagnosis. I often had to skip school due to my condition, but they thought I was making it all up. As time passed, my teachers learned more about diabetes, and my classmates began to understand me and the environment became more peaceful,” says Nail.
There was a period in Nail’s life when he thought that, since he was being bullied, he needed to become a ‘tough guy’. He ended up getting involved with a bad crowd and started smoking and running away from home. This behaviour continued until his parents sent him to a camp called ‘Zhana Urpaq,’ which completely turned his life around during the seven days he spent there. The supportive environment at the camp helped Nail deal with his diabetes-related issues.
“They helped me to change my attitude towards my diagnosis. Before, I felt like I was almost a corpse. But now, I’ve stopped thinking about it so much. I remember one morning waking up with a sugar cube in my hands and a satisfied look on my friend’s face. He said, ‘I found your kryptonite.’ I remember laughing for a long time. After my first visit to the camp, I ended up working there for the next four years,” says Zakiyev.
Now Nail is studying to become a psychologist at International University in Moscow and is involved in diabetes activism with his father. He also took an active part in writing ‘A Practical Guidance for Children and Adolescents Living with HIV and Diabetes,’ which was developed with support from the United Nations Children’s Fund (UNICEF).
Nail confesses that he once aspired to become an endocrinologist to search for a cure for diabetes, but his perspective changed after a conversation with Askhat Abzhanov, the founder of the Republican School of Leadership. Abzhanov made a compelling point that resonated with Nail: “Doctors treat the body, and psychologists treat the human soul.” At that point, Nail was already actively assisting teenagers with diabetes and serving as a mentor at the ‘Zhana Urpaq’ camp, where he aided others in developing their soft skills. Mr. Abzhanov’s words gave shape to his life path.
“Doctors treat the body, and psychologists treat the human soul.”
“I got involved in diabetes activism because of my father, and he was in it because of me. While my father works with parents and the state, I focus on helping teenagers. I believe that no one can understand and support them better than I can. When I received help myself, I realized that life didn’t end with a diagnosis. I know that many teenagers go through this and some are still struggling,” Nail asserts.
“When I received help myself, I realized that life didn’t end with a diagnosis.”
Nail provides training for teenagers on how to live with diabetes and talks to them, as he knows how important it is to have understanding friends.
“I provide the services of a friend, talking to them as an equal, explaining what diabetes is. My knowledge of psychology helps me do this effectively. They find me through my parents and in diabetes chatrooms. When I worked on the practical guidance manual with UNICEF, I helped adapt the text for teenagers. In this way, I made it easier for them to grasp the information, and I also helped select the most pressing topics to address,” says Nail.
Nail himself often recommends the practical guidance manual when someone needs a plain explanation of diabetes and how to live with it. He informed his girlfriend of his diagnosis by sending her a link to the manual he helped create. The authors aimed to provide diabetic teenagers and their families with the most pertinent and important knowledge about diabetes, relying on the opinions of experts, children, and adolescents living with the condition.
“Diabetes has changed my life a lot, but if I were offered the chance to change everything now, I would not want to.”
According to Zakiyev, parents should avoid being overprotective, as this can cause the child to withdraw internally. For those living with diabetes, Nail advises accepting the diagnosis and learning how to manage the disease while also living life to the fullest and looking for the positive in everything. He recommends looking up detailed information about the diagnosis to start and acknowledges that the rest of diabetes management skills will come with experience. Nail believes that life doesn’t end after being diagnosed with diabetes, but, on the contrary, a new life starts.
“Diabetes has changed my life a lot, but if I were offered the chance to change everything now, I would not want to. I have gained a lot thanks to this experience, and it is extremely valuable to me,” says Nail.
