Many people know me as a person living with HIV. So when I talk about my long-term fight with diabetes, they get surprised and often ask “Oh do you have a diabetes too?” Double trouble, that’s what I call it. In my memory the symptoms of high blood sugar levels started in 1997, and I was offically diagnosed in June 1999 at age 21.
Back then I was living at a boarding school, and you cannot imagine how hard it was for me to cope with diabetes while on boarding school food. I had to stop that school year just one month before final A-level examinations. That year I did not abandon school only, I also had to give up on my favorite sugary and fizzy drinks, and many foods. Suddenly it seemed that everything delicious contained those unhealthy sugars!
There was a lot of stigma and myths around diabetes. For example that diabetes was for the elderly or super rich. I was not old or some super rich kid! And then there were the weird stories… I was using insuline which had to be kept cool, and since we did not have a fridge, I had to keep it in a fridge at a local bar as these were the only places with a fridge at the time. Every evening I would go to the bar for my insuline shot and people would always make fun of me. “How come you get a disease of rich people when you are poor?”, “Are you injecting drugs?”, “Stay and drink beer with us!” No matter how they bullied me, I did not give up.
One day, when I saw a mother feeding a 6 months old baby with diabetes, I told myself that if a young mother can manage to keep her baby healthy, I am also able enough to make decisions on how I should manage this chronic disease and grow older with it. Since that day I learned to take control of how to manage my diabetes myself and honestly, after all these years, I have to say that it is not that hard as long as you have the will and motivation.
My sin moments
Earlier this month I was at the hospital for my diabetes check up where I ran into my peer Jaco with whom I also share the same doctor. We were chatting and he asked me how long I have been living with diabetes. For me that is almost 25 years now. So I was quite shocked to hear he was 7 years when diagnosed, and that now he is living for 45 years with diabetes. It is amazing to know a long term thriver with diabetes!
Jaco made me really glow to see how healthy and cheerful he is. He is somebody who does not give up easily. I asked him what was the hardest thing since being diagnosed at 7 years? He said “Giving up on eating biscuits”. We laughed hard about that, and I admitted that we have this in common. Then he continued and said ”When I was 11, I told doctors that I cannot continue that diet, I want to eat something sweet sometimes, food that everyone is eating. So they told me that sometimes I could eat a biscuit, but only a little bit and not everyday”.
I asked him “Now that you have been living with diabetes for 45 years, what is your sinning moment?” He said, “There are these Dutch biscuits called speculaas, sometimes I can eat the whole pack. But next day is pay back time! I must also work out by doing sport”. So Jaco cycles and walks everyday for 30 min.
Jaco asked me in return “ What is your moment of sin?” And I said “I like coconut macrons very much. That is the kind of biscuit I can eat every time”. And like Jaco, I pay back and walk my 10+ km.
This is how I can enjoy my life… Sin a bit, and balance my sins with a health lifestyle. We concluded that even when you are living with a chronic disease, you can arrange your life around it, still be cheerful and have a successful life. Jaco does not sit at home defeated by diabetes, he works for a company as an IT architect. And I feel the same about life. I run my company ‘Indonongo’, change the world as HIV Stigmafighter, while taking care of my healthy new me.
I am very thankful our paths crossed. Thank you Jaco, for being an inspiration for many. We don’t let diabetes stand in our way!
WE LIVE, WE AGE, WE THRIVE!