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!
Peace,
Eliane
hivstigmafighter 