five ways to thrive – HIV stigmafighter

Hello my lovely people. Some of us are always counting their age, forgetting to do the things that make them happy. Remember, there is no such thing as putting your life on hold, because we are all ageing, every day!

This may sound weird, but I am always looking forward to ageing. When you cherish your dreams and love your life, ageing should not be your problem. As long as you are happy with yourself! Look at Eric the dragking, never giving a damn about age at all. Who knew I would be the first Dragking to be open about thriving with HIV?

Of course, for many of us living with HIV, it is quite a journey to get to this comfortable place that we all need to live and age healthily. Knowing first-hand how difficult it is and how many barriers we need to break, I have always been very committed as an activist member of the HIV community to share my personal experiences to change my lifestyle to improve my health-related quality of life.

Yes, there are many discussions and workshops on this topic, but how many of us really work together with people living and ageing with HIV instead of for them? So being always full of ideas as an HIV activist and entrepreneur, you may remember that last year I gave a performance called five ways to THRIVE. Well, sending the message through a performance or workshop is not enough!

What if we ask the HIV community directly to share their dreams, what they do to regain trust, and to share their journeys towards staying healthy while ageing with HIV?

Today I would like to share with you that we have indeed started to engage the HIV community to co-design community tools to express our challenges, and share our dreams and ideas to age healthily!

I am so blessed to get a lot of support from friends in the worldwide HIV community to think along, THRIVE is very much alive!

Through THRIVE we, as creative members of the HIV community, want to keep developing useful concepts and share our experiences. But we cannot do this alone and we will need support from our HIV allies to work with us to THRIVE while ageing healthily with HIV.

So, are you curious how you can engage with us? Get in touch and let’s THRIVE together!

Peace,

Eliane

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