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Thapi Semenya (second from right) with her family.

It was 17 years ago, yet I still remember the hospital where I stayed with my family, the unfamiliar sounds and smells and the uncertainty of what was wrong with me. First, I had nausea, dizziness and dehydration, so my parents took me to the doctor, who found my blood glucose was very high and referred me to the hospital. After a series of tests, I was diagnosed with diabetic ketoacidosis (DKA), a medical condition caused by high blood glucose levels, dehydration and ketone build-up. With this came my type 1 diabetes diagnosis. I was only six.

Following my diabetes diagnosis, I remember taking everything in stride. In fact, looking back, it was an optimistic time. My family and I stayed in the hospital to learn about diabetes and receive the required support.

Growing up in South Africa, my parents and family raised me like any other child, ensuring I never felt different from other children. However, in my self-conscious teenage years, I became aware of my condition and started questioning why this had happened to me. I always had my parents’ support and that of my teachers, who knew about my condition. Despite this, I wanted to live like any other child and not think about my diabetes. So I entered a denial phase.

I wanted to live like any other child and not think about my diabetes. So, I entered a denial phase and stopped taking my insulin

In grade 6, I had stopped taking my insulin for about a month, telling no one what I was doing. I later became extremely ill at cricket camp and fell into my first diabetes-related coma. I remember waking up in a hospital bed and my parents asking me why I had stopped taking my insulin. I could not explain my feelings and actions at the time, even I did not fully understand them. But I remember telling them I wanted to live like any other child, without insulin injections before eating and checking my blood glucose. Finally, my parents decided to send me to a clinical psychologist to talk about my condition and help me accept it.

Since I was six, I had never really processed what I was going through, which was a lot. My school years were not easy. I was extremely skinny and tall. Because of this, my schoolmates would often make fun of me. Also, since I was not taking my insulin, I was losing weight, which only made the teasing worse. At about this time, my HbA1c was at 16.2. I remember going to doctor after doctor to hear the same story: If I did not lower my HbA1c, I would have severe complications. Together we looked at different ways to lower it. But because I was in denial, I never took them seriously.

This cycle lasted for six years, and every year I was hospitalised at least six times due to DKA. Fortunately, my mindset changed after a critical episode during my first year of university. This time was different and made me who I am today. I spent two weeks in the ICU when I was diagnosed with bipolar disorder. Again it was not an easy time for me, but thanks to the guidance of one doctor, I took a positive view of my condition.

Experience is the best teacher, and through my experience, I have learned so much

I was in denial because of a lack of diabetes education. There is much stigma associated with diabetes, which can negatively impact the people affected. When information on the condition is accessible and available, you feel accepted and cared for.

Now, I can share my story with people in the same situation. Listening to people’s stories taught me that not everyone feels positive after diagnosis or benefits from medical insurance to cover their medication. There is a lack of diabetes education, especially in the public sector, and much more needs to be done. These are just some of the reasons that drive my advocacy and wish for better diabetes awareness, not just for people living with diabetes but for their families and communities.

Let us stand together and support each other.


Thapi Semenya is an IDF Young Leader in Diabetes 2022-24.

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