A vivacious HIV community

29 September 202310 February 2025hivstigmafighter

My lovely people, these past few days I have been very proactive and this is really boosting my confidence and energy as well.

Last weekend I was invited to give a THRIVE workshop during the 4th National HIV positive Day, an initiative by Utopia_BXL, which aims to bring together the Belgian HIV community and partners in Brussels, Belgium. This was a great opportunity to share THRIVE with the HIV community as a valuable contribution to living and ageing healthily with HIV.

The THRIVE workshop was scheduled in the afternoon after a morning mostly filled with presentations and discussion about quality of life, challenges of the migrant community in Belgium, etc. Following these, THRIVE is perfect as it is engaging and fun. In a THRIVE workshop there is no time for boring powerpoints or keynote speakers. No, THRIVE is all about being lively, excited and energetic. In other words about being vivacious!

THRIVE started by exploring the dreams and aspiration of the HIV community and our allies. This was the first time ever to use the unique dreamtrees co-designed with our thrivers. And participants were really passionate about making their own dreamtrees and eager to share their pieces of art. Aren’t they lovely?

What is so good about the dreamtree is that by sharing their future, the participants get very practical hints and tips from others on small steps they could take now. And also on how to remain patient and focused on achieving their bigger dreams.

The favourite game for many participants was our brand new addition, the Tower of Trust! They really loved the feature built into the game where you can ask questions that have been bothering them and that they would never even ask to their own family, friends, or doctor…

This was their chance to pose them by hiding them in the Tower of Trust. So, with all these questions hidden in the Tower, no one will know who posed it.

Then, when any question is drawn, we would discuss together without any judgement. Participants really loved this game because they have so much freedom to express themselves anonymously and then have lively discussions about issues that are bothering the HIV community. Many wished we would have more time to play it!

Example of a tower of trust question: “Why am I the only person in my entire family living with HIV?”

The final three steps (Spark, Grow and THRIVE) we celebrated being part of the HIV community. I ‘sparked’ the party with a poem called ‘It is my time to fight HIV stigma’. And yes, it was my debut to cite it in French! We then learned taking some baby steps towards living positively, Africa style, and finished the workshop with a positive dance, energized by some sweeping Africans songs.

What a workshop! I understood it was very much appreciated by the participants and some requested if we could do it again in future. It gave me immense joy to see that my vision to live and age healthily with HIV can be put into action by the HIV community itself.

I am so proud that THRIVE can be a part of creating a vivacious HIV community!

Peace,

Eliane

THRIVE

28 July 202318 August 2023hivstigmafighter

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

FIVE ways to THRIVE

28 January 20228 March 2025hivstigmafighter

This month I had the opportunity to participate in the ‘Stories from HIV Long-Term Thrivers’ forum where I gave a spoken word performance alongside an amazing and inspiring panel. The forum was organized by ViiV healthcare.

How did I give this spoken word performance? I decided to share my 5 ways to thrive! Even today, to many people HIV is still seen as a disease to be ashamed of, they consider it as a big challenge while actually you can live a perfectly happy and healthy life. Here are my 5 ways to thrive for those who missed my performance:

Trust (again)

In 2003, when a doctor told me to buy my coffin when I was diagnosed with HIV and sent me away desperate, without a prescription, I spent a few hours thinking only about my death. I lost all confidence to live. Instead of looking for help, I started preparing my funeral. Hope started glowing when my husband brought me to another hospital for sound advice and to get my HIV treatment started. When I held my first pills in my hand, I rejoiced in taking them because I firmly believed they were going to save my life. Only after regaining trust in myself, I was able to work on my next step…

Move (my body)

My new reality made me even more aware of the importance to keep myself in shape and healthy. But what what get me going? In 2003, I wore a beautiful sky blue wedding dress and I set myself as a goal to wear it again at my 20th wedding anniversary next year. So, I decided to walk at least 10 km every day to keep me in shape and make sure for me wedding dress to fit me again. Another really important driver was for me to reduce the number of pills I am taking as I also need to take care of my diabetes. So as a huge added benefit of my daily walks I was also able to reduce 4 pills. And my weight? Well, I lost 8 kg so far, just a tiny bit to go. I like my healthy new me!

You all know by now that I came out of the closet with a big bang! As a campaign poster girl, with my message posted all over Amsterdam. After staying with my secret for more than 10 years, sharing my story with the world was a huge relief for me and made me even stronger and more courageous. It was also a great motivator to help more people in the HIV community, for example by peer counselling and support people living with HIV on emotional well being. It also motivated me to learn ever more about HIV, related stigma and existing inequalities in the world. Last but not least, I also launched an initiative called Stories of Hope to show the diversity and talents of the HIV community worldwide.

Perform (my arts)

My greatest passion has always been to be on the stage. Since very early on in my life, I liked entertaining people. And I do so in many different ways, as a poet, through traditional Burundian dance or playing my indonongo… While I am lucky to consider my passion as my job, my key message to all of you is to work out routines, find hobbies or simply try to enjoy your job and all other great things in life. Creating and maintaining a diverse lifestyle is probably really my biggest secret to staying healthy. So, despite having gone through so much in my life, I am confidently looking forward to growing old.

Dream (my desires)

Unfortunately, in Africa people living with HIV/ AIDS are still dying. My nephew Kevin lost both his parents because of AIDS within 8 days in the year 2015. During the forum I shared my wish for a world where children like Kevin will not lose their parents anymore, where they can access health services so they can get tested and treated, and where they can grow old in good health. And right now, for Kevin I wish he can be supported to grow up in a community where he will not be stigmatised.

Yes it is possible to thrive whilst living with HIV. I, and many others in the HIV community, am an example of that. I am always proud to share my little secrets to growing old while enjoying my life with HIV!

Ageing positively

10 September 20218 March 2025hivstigmafighter

As a woman and mother living with HIV how do I see ageing?

A lot of people are afraid of ageing, yet for me it is a very exciting journey and I am actually looking forward to getting older! So, let me share with you why I see ageing in a positive way.

The whole of my adult life, only based on my appearance, people often assume I am still very young. This despite my double trouble of HIV and diabetes. In my life this has led to many embarrasing situations.

When I took my first born for her first vaccination to the clinic 20 years ago, the nurse told me to call my mother. When I told her that I was the mother of my daughter, she yelled at me ”Listen girl, don’t play with me. Call your mother, we need to ask her some questions”. This made me very sad as it reminded me of my mother who died two years earlier. So, with tears in my eyes I responded that “I AM the mom”. When she started hitting me I took out a breast, squished it and made the milk jump unto her. Calmly, I said, “Do you believe me now?” With her guilty face, not even apologizing, she finally started vaccinating my baby. That was the first time I really wanted to age and look like a mother to the people around me.

Three years later, another story happened on the 14^th of February 2004 during my husband’s birthday in Luanda, Angola. We invited friends to celebrate with us at a local disco. Everyone was allowed to enter, except me! The bouncer said “You are a ‘quatorzinha’ (14 year old), you can’t enter here!” Everybody started defending me saying I am 26, married and a mother. So when we were about to leave by car, our Angolan driver greeted us and called me “boss, please get in”. The bouncer asked him if he knew me and he replied that we are a married couple. Finally the bouncer believed me, apologized and let us in. I really wanted to celebrate in this place as dancing can lift my spirit! In no time I was already back in a good mood to forget all the drama of being called a quatorzinha.

Since then there were countless times I have been mistaken for my age, hoping that when I reach 40+ things will change. But even as recent as last week, when I wanted to buy a bottle of wine in a supermarket, I still was asked to show my ID by two employees to prove I was older than 18! I told them to look deeper, that I was older than that. But they would not believe me and that without showing my ID they were not going to give me the bottle. Luckily, I had my passport with me. You should have seen their face when I showed it and when they read I am 45! They apologized and said “We are so sorry you look too young for your age!”

Over the years I have learned from these stories that instead of feeling insulted by people that misjudge my age just by looks, I should accept it as a compliment. So these days, I smile at these embarrasing yet funny moments rather than becoming angry like I used to in the past.

What is my ‘secret’ to ageing? I firmly believe that taking good care of my body and mind has a huge positive effect. I am staying in shape by walking everyday 10+ km, I love performing on stage, I am always trying to be happy when I am at home by singing and laughing out loud. This positive take on life must help I guess. And the added benefit is that I am still reducing my diabetes medication intake!

So ageing does not bother me at all. The fact that my ‘looks’ apparently do not match my age is something I now embrace rather than fight! What matters most is that while I am ageing, I also become more fulfilled, happy and healthy!

Peace,

Eliane