FIVE ways to THRIVE

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!

Share (my emotions)

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! 

Inyambo STARS on WAD2021

On Saturday 4 December 2021, I helped Inyambo STARS to organise a local event to celebrate World AIDS Day. This was a day to show their community why they are true talents, showing their fashion skills AND committed to helping their community, especially supporting vulnerable people living with HIV in Gihanga, Burundi.

Inyambo STARS, RBP+ ( Reseau Burundais des Personnes vivant avec le VIH) with indonongo.org support, organised a total of three activities. And as large gatherings were not allowed due to the COVID-19 pandemic, they really had to show their improvisation skills this time around!

The day started with a great Burundian tradition called Ibikorwa Rusangi, community work. All over the country, every Saturday morning from 8h00 the people of Burundi contribute collectively to keeping our community healthy and promoting good cross-cultural relations. They were joined by their parents, local representatives, shopkeepers and other community members.

Really, there is no way Inyambo STARS can perform their arts without maintaining good relations and giving back to their community. I know this gave them a lot of inspiration to stay connected and work together as one. What a great opportunity to connect the community of Gihanga to fighting HIV stigma in our country.

After Ibikorwa Rusangi, Inyambo STARS, a selection of people living with HIV and partners, marched together through Gihanga in solidarity with people living with HIV and to raise awareness on this year’s World AIDS Day theme: “End AIDS, end inequalities , end pandemics”. Did you know that in Gihanga there are 246 people living with HIV, 84 men and 162 women? Of them 29 are younger than 29 years, of which 8 boys and 21 girls.

Yes, normally Inyambo STARS would now have done a fashion show or catwalk, but I do believe this March together with people living with HIV did really help them to unify with the HIV community.

They closed the day by expressing solidarity and support to vulnerable people living with HIV. The cordinator of RBP+ reinforced the message to the community of the importance of staying on medication and going to the health centre for regular check-ups. She also called upon pregnant women to do a HIV test so they can detect any new HIV cases to prevent neonatal HIV.

Helping Inyanmbo STARS and their partners to support people living with HIV in Gihanga during World AIDS Day, inspires me a lot and gives me so much positive energy to continue making impact in my community of Gihanga and possibly in the whole of Burundi.

Peace, Eliane

A big applause to the real STARS of the day!

World AIDS day 2021

It’s world AIDS day and, although AIDS continues to kill people and people living with hiv/ AIDS continue to face inequalities, there is a growing number of stories of hope.

This week I met two more people cured of HIV. While they highlighted how they experienced love from others whilst battling cancer and living with hiv, they also received hate and judgement. Stigma is still a big issue. Yet, their stories fill us with hope; that one day we will end hiv and AIDS, and that we must begin our journey by ending stigma and inequalities based on gender, income and race.

While conveying their message of hope, I am also very proud to contribute to the fight against inequalities by sharing two new stories of hope today. I know that Anna and Perry will inspire you with their own stories about overcoming hiv stigma by using their talents.

Don’t let hiv stand in your way!

Peace,

Eliane

A bouquet of problems

My birthday month, November, had a great start by doing what I like most, giving my HIV activism a boost. Between 4-7 November I was in Istanbul for a face-to-face ‘Skills Training to Empower Patients’ (STEP-UP) and networking weekend organized by the European AIDS Treatment Group (EATG) Training Academy.

After more than a year of online training because of Covid 19, I got a chance to finally meet my fellow European and Asian HIV activists and advocates. Everyone was dying to meet and finally get to know each other more and share our experiences because in the end it is really about community voices. It was quite interesting to experience the difference between zoom meetings and ‘real’ talks together.

As we all came from different parts of Europe and Central Asia we had to speak different languages, so some were speaking English and others Russian. But in the end we all share the same goal and then language barriers can be overcome. While chatting with different people and listening to presentations, I realized that we all share what I call a “Bouquet of problems”;  Stigma, discrimination and criminalization.

During the weekend I learnt so many new insights. For example, my friends from Greece and Georgia shared with us that among people using drugs, women are way more stigmatised than men. Or that in some countries mothers living with HIV are still criminalised when breastfeeding and that they are not receiving any support from the health system to obtain baby formula or do medical checks during their breastfeeding period. 

Yet, all the new information led me to ask so many questions. For example, why are especially women still so vulnerable to attack and deliberate stigmatision? There are so many new developments and guidelines, for example on breastfeeding, there is U=U, etc. In 2021, women living with hiv should not be criminalised at all. I am telling you, no mother would wish to transmit HIV to her child on purpose!  

It shocked me to hear that there are still 130 (!) countries where people living with HIV are injustly criminalised, and in 50 countries we can be prosecuted because they have outdated laws related to sexual, but also on spitting, biting and even breastfeeding. People, after 40 years of HIV/AIDS, instead of being stigmatised we must focus our fight on removing inequalities and to demand the right to access HIV treatment and receive good medical care.

Our training was epic, there was no taboo, we talked about many topics and received useful tools that we can use in our communities. It feels like I have known this group for such a long time as we shared so many laughs, jokes and fun. It made me wonder what more we could have achieved if we could have done all sessions face-to-face instead of via zoom. I gained so many friends, which is fantastic. These moments of togetherness bring back humanity to our lives.

By Sunday, we all went back home empowered with knowledge that we will share with our community and use to convince our decision-makers and politicians to DECRIMINALISE people living with HIV!

Thank you EATG for organising the STEP-UP training and making this such an inspiring weekend, we shall meet again my Activist Friends. Keep up the fight, we are on the winning side since we DARE to speak up about our bouquet of problems!

Peace,

Eliane 

My sleepy dragon

This month Akira, my youngest son of 13 years old, and I travelled to Antwerp for a filmshoot for the ‘Undetectable equals Untransmittable’ (U=U) campaign in Belgium. Whilst in the train towards Antwerp I asked how he felt to be part of this campaign, since this was not his first time participating in campaigns related to HIV and AIDS. He was also part of the ‘coming out of the closet’ (HIV uit de kast) campaign, the short movie ‘people from the HIV association‘, the Amsterdam 2018 AIDS Conference welcoming campaign, and now U=U. Akira’s answer was; “Mom, I am proud to help out. I believe what we do is pretty cool! I hope we are bringing the message across to people so the new generation won’t suffer a lot of HIV stigma anymore”. 

At that moment, I got a flashback of when I told him about my HIV status when he was 7 years old. I wanted to take this opportunity to proudly share this with you. Back then, Akira asked me “Mama, you have a lot of medicines. Are all of them for diabetes?’’ I said ‘’No, they are for something else’’. Immediately I felt that he was ready for me to share the truth.

He asked ”What do you mean for something else?” I was prepared! I knew he liked to watch TV cartoons with dragons, so I chose to use the dragon as a synonym for HIV. I said ‘’Akira, mama has a virus. This one, it is like a dragon in my blood. He has been with me for many many years”. Akira asked ‘’Mama, does the dragon breathe fire?”. “No, because I take medication everyday. The dragon is very weak now, the medication is putting out the fire. The dragon is asleep in a corner of my blood and he can no longer play to move and dance around in my blood’’.

Then Akira asked “How can someone get a dragon?’’ I answered “Through contact with blood of someone who also has a dragon and who is not taking medication. People have the dragon in their blood, but they do not know it because they did not yet test their blood for the dragon’’. He asked again, now really excited, ”Wow mama, do I also have a dragon in my blood?’’ I said, ‘’Good question! But you don’t have a dragon, because when you were in my tummy I already took the medication every day to keep the dragon asleep, so that he could not touch you. You were born without the dragon! And now I am telling the world that my sleepy dragon does not harm me or anyone close to me! You can hug me, the dragon cannot touch you. He is sound asleep”.

He asked again “So I don’t have a dragon?” I affirmed. “But how do you feel inside? Does it hurt?” I replied that it does not hurt, but that i have to keep controlling the dragon with medication and sometimes medication can make me sick for a few days, but that afterwards I am fine again. He responded telling me “When you feel sick again, let me know, I will make you a cup of tea!’’ Then he gave me a hug and said ”I love you mom, you are my super mama!” 

After this conversation I felt relieved to see how well and easy he took this information. I guess that when you inform people with a positive mind, they will take it in a positive way and that there will be less chance of rejection. And if indeed you are being rejected, it is because they do not (yet) have an idea what you are talking about. Then, just try again and focus on a positive way to explain once more until people understand your message. This is how you will contribute to ending HIV stigma.

Raising the next generation of stigma fighters

Informing and empowering the next generation is our pathway to ending HIV stigma. If they are willing to speak up without fear, then the World will change. It is this generation that I hope will grow up to see their mothers, fathers, and any other person living with HIV to live without fear of being stigmatised.  I am proud to be raising future ambassadors and stigma fighters, together we can change the World and the change starts with us.

So far I did not regret to disclose my HIV status to my son. I am actually enjoying doing activism with him. Dear parents living with HIV, I know that when it comes to stigma around HIV and AIDS, you do everything it takes to protect your children. I have done so for many years, yet at some stage I also realised that I had to go beyond that and that I also needed to retain their trust and share my HIV story. The day I shared my story helped me also to gain more confidence and freedom to share my HIV story with the rest of World. No more secrets! I am blessed to have them in my life and sharing the truth about my life with HIV was the best present I could give them in preparation for their future healthy life choices. 

I am a proud HIV MOM 

Peace ,

Eliane 

Ageing positively

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 14th 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

Memorable summer of 2021

Whilst we are nearing the end of a rainy summer, I would like to reflect on my summer time. It was actually very enjoyable no matter how I look at it! It started excellent by hearing news from my diabetes doctor that I was allowed to stop 3 more pills of my medication.

Then there was Mandela Day on the 18th of July where we shared our Stories of Hope through a photo exposition, and I had a great celebratory closing party with my heroes!

A few days later I celebrated my kids’ birthdays which all of you know happen for all three of them within 4 days! My oldest daughter turned 20, one of my sons 15 and the other 13. What a blessed week for all of us. 

Then we took off for a few days in the South of the Netherlands, Maastricht. What a beautiful place and surroundings. It was a short stay but full of sportive activities as I like to keep my Healthy New Me in shape! We walked hills, went into caves which still made me accomplish my sports targets every single day during my holiday! And on top of that we went one day on an (e-)bike and mounted some impressive hills with equally impressive names like the Dead man’s alley (Dodemansweg in Dutch). I was so proud to be able to get to the top of these hills and admire the incredible view. Who says Holland is flat?

Despite the many showers it was real fun to cycle together and sometimes get surprised by a shower and hide under a tree, still ending up wet because of the drops getting through the leafs. We never gave up, no matter how the weather wanted to stand in our way.  It was a truly memorable time in Limburg.

Back in my hometown, I was just on time to join Amsterdam Pride. It was my lucky day because on many years whilst in the Netherlands, Pride week would always happen when I am on holidays abroad, so this time I could attend for the first time! Joining the Pride as part of the BI plus walk and wearing my HIV stigmafighter t-shirt and U=U bandana also allowed me to spread the message of UequalsU and to fight HIV stigma.

Being part of the Pride helped me to convey these two messages to a few more people. It felt great joining so many activists and LGBTQ+ communities in march. I keep on dreaming to one day see people in my country Burundi wave the Rainbow flag like here!

Beautiful people, Do not let the fear of corona conquer your life! As long as you try to stick to the rules, it’s ok to have a little fun. We really should accept for us to live with corona for many years to come and start adapting to the situation, dealing with it just like we have dealt with many other pandemics.

Nelson Mandela once said that “A WINNER IS A DREAMER WHO NEVER GIVES UP”. Who know one day we will win this battle? keep on fighting for change!

I had a great, fruitful and memorable summer of 2021.

PEACE,

Eliane

My Heroes of Hope

As an African artist living with HIV in the Netherlands for more than 15 years now, I continue to experience a lot of stigma and discrimination based on me being open about my HIV and my beautiful colour. I realized that for many people with a migrant background stigma is indeed still a major issue. So, in April this year I launched Stories of Hope which aims to inspire people to share their talent as a positive way to deal with and raise awareness about stigma.

On 18 July, Mandela Day, together with the other ‘Heroes of Hope’ we shared our stories with the world!

Sharing our stories on Mandela’s birthday was a perfect moment as he continues to be a big inspiration to me and the world. I have learned a lot from his life experience as a freedom fighter, reconciler, unifier and inspirer. In the spirit of Mandela’s legacy, I truly believe that Stories of Hope will give people inspiration to fight stigma and bring positive change in our communities.

Stories of Hope can be visited at www.storiesofhope.nl. My dream is that our collection will continue to grow in the Netherlands and also beyond. Please vist the website and feel free to connect me to people that would like to share their inspiring stories with us. We believe in your talent and let’s fight stigma together!

A very special thank you to the European Aids Treatment Group for supporting me to make Stories of Hope happen!

Peace,

Eliane

Meet our Heroes!

Today, Mandela Day 2021, we proudly present our very first eight Stories of Hope! Since we started to work with our Heroes in April this year, we collected stories related to HIV, depression and vitiligo. Our aim is to grow Stories of Hope into a platform where people facing stigma are able to share their unique experience on how stigma can be overcome through their talents.

There is no better moment to share our first collection of Stories of Hope than Mandela Day as Mandela continues to be a big inspiration to the world. In the spirit of Mandela’s legacy, we truly believe that Stories of Hope will give people inspiration to fight stigma and bring positive change in our communities. In the words of the great Nelson Mandela: “A winner is a dreamer who never gives up.”