My wonder woman

Being open on social media and helping different individuals can be quite a challenge sometimes. Recently I was approached by a man for information about HIV diagnosis. He claimed to know his HIV status and apparently he was exposed during sex without condom. As he knew his status (negative), he ended up forcing this woman to go for a HIV test after they already had unprotected sex.

Why? He said that he suddenly became suspicious of her. When their test result came in, it confirmed that she was HIV positive while his result was negative. This made him very angry and in our conversation, he bluntly put the blame on her for allowing him to have sex without a condom. So I asked him, “isn’t this a joint decision to do that? Why should she be blamed?”

Since I don’t know her as he does not want to put her in touch with me, I decided to write a letter to her as there are many women and girls who go through this in many places. So, here is my letter to you, my Wonder woman!

My Wonder woman

How are you?

We don’t know each other but I know your story through your boyfriend. By the way, he is a coward! First I wanted to let you know that you are not alone going through this. Learning that you are HIV positive is a scary thing, especially when you are caught by surprise. You were not aware yet that you were joined by this tiny virus called HIV. I call it “tiny” because you can beat it.

I know it breaks your heart to trust someone and you end up being blamed and dumped because of this tiny virus. But let that man and this HIV virus be the losers!

I heard that he forced you to go with him for a test and that is how you learned about your status. I am sorry you have to go through this. Your boyfriend says that he already knew his status because he does regular checks up. Then why is he so angry at you? It was his choice not to protect himself without knowing your status. Why didn’t he use a condom or PrEP? And still he wants to blame you for being Positive while he got to stay negative? What is he complaining about? He is a such idiot!

My wonder woman, I can feel your pain. You may have no one to share your secret, you may feel  darkness, scared and alone. If you happen to read my message, please come and talk to me. Don’t stay alone, because there are a lot of sisters who went through a lot and came out stronger than ever.

Wonder woman, get on medication as soon as possible. When you are on medication you will become undetectable, you cannot transmit your HIV through sex. You can continue to plan for your future. If you want you can become a mother. Your HIV is not here to stop you from chasing your dreams. Live healthy, give yourself a compliment everyday. Every little achievement in your life deserves a celebration. Continue to go out with your friends, don’t be afraid of sharing beers, laughs or hugs, HIV will not jump on them.

If you want to share your secret with someone, choose wisely with whom to share. Start with a person you trust most and see how it goes. If that person is your real friend, he or she will keep it safe and will help you in case of an emergency. And may also help you to become open about your status one day.

One more thing. Smile often, it helps to brighten your heart and spirit. I like to smile too, that is why I recommend it to you. Stigma around HIV and AIDS is still the biggest issue in our World but, once you embrace your HIV status and have a strong mind, you will fight together with others sisters and brothers in our HIV community.

Wonder Woman, don’t let HIV stand in your way! Continue to live positively, like many of us are already doing for ages . WE are strong and Powerful. I am sending my love and positive vibes to you, wherever you are in this World.

Peace,

Eliane 

How to build confidence in a day

My lovely people, February is called by many Valentine’s month. It is considered a romantic month, and for me it is also called birthday month as it is my lovely husband’s birthday on Valentine’s day. This month we chose to celebrate his 51st birthday in Rome.

Why Rome? I grew up with in a strong catholic family with religious parents. In my youth I was a priest helper, I was part of a church dance group and I grew up with catholic values. I always believed Rome was the Holy City; As a child I did not know that the Vatican was actually a state in Rome where the Pope resided, I thought He lived in Rome and his church was called Vatican.

In 1990 Pope John Paul II visited my country Burundi. I kept very sweet memories of that and since I always fantasized of being in the Vatican one day, to see where the Pope lived. Later on, during high school we also learned so much about history and the important influence of the Roman empire and Christianity as one of the world religions with its seat in the Vatican.

But when I was told in 2003 that I was going to die because of my HIV, I thought that I would never be able to visit the Saint Peter Square in the Vatican or see the place where gladiators, like in the movie, would never give up until their last breath. So having overcome the hurdle of access to HIV medication, my WILL to visit Rome on day only increased. I really wanted to fulfill that childhood dream.

So when my husband asked me which city in Europe I wanted to visit, there was no doubt that this should be Rome. So finally, after these horrible covid times I said “darling, let’s go to Rome to celebrate your birthday. Carpe Diem!” He asked why Rome? I explained that I had been dreaming of this since I was a kid, to see where Pope lives and set my foot in the Vatican, and to tell HIV that my dreams can still come through!

The mighty Colosseum

And it did come true! We visited Rome from 10 to 15 February. First we visited the colosseum, an incredible structure, considering it is almost 2,000 years old! Only when you are there, you are able to realise what immense power these Roman emperors literally held. It is not difficult to also feel the pain and injustice done to the slaves that built it. The whole area around the Colosseum, on the Palatine hill and around the Forum, you start realising how sophisticated and hard working the common people and slaves were. Rome was certainly not built in one day, and surely not by the Romans themselves!

The Pope’s favourite chair

Then it was time for the massive and beautiful Saint Peter Basilica, the domain of the Pope. It is so impressive. We were lucky to visit the Vatican gardens with their three styles; the English, Italian and French gardens. After 12.00, once the tourists have left, this is where you will see the Pope meditate. The most touching story involved ‘my’ Pope John Paul II again, who I really kept in my memory since his visit to Burundi. We passed by a garden where he used to come daily to pray next to a statue of the Virgin Mary. Although there were many different chairs in that garden, he was not conformtable on any of them. So the gardener made a very simple seat out of a wooden log for him. And fromt that moment, when he sat in it, he felt the connection. He felt ‘grounded’, rooted to the earth and ever since it became his special seat. I was so happy to sit on that chair. It made me feel so unique!

Rome is beautiful and vibrant! It takes some time to really appreciate the city, but once you do, you see so many beautiful things. It is when you notice that each bridge over the Tiber river is special in its own way. For example, you will notice the Jazz bands playing on the Ponte Sisto on Sunday afternoons and see people taking time to enjoy life. And see me joining them, dancing, to become part of that amazing spontaneous atmosphere, ‘whipping’ others to make the whole bridge one giant open air Jazz festival!

Yes, I have seen with my own eyes that Rome was not built in one day… My acceptance of living with HIV also took what seemed millions of days to come to a point where I was able to enjoy the confidence I re-built myself. But in the end, my HIV did not become my limitation to give up on my dream to visit Rome. 

So, despite Rome not having been built in one day, NEVER forget that it only takes one day, one short moment, to enjoy life to the fullest.

Life is really too short to waste it!

Peace,

Eliane

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!

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 

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

Talented migrant

My lovely people, can you explain to me why white people coming to Africa are quickly called “experts”, but people of African descent in Europe are often called “refugees, migrants, or illegals”?

After I married my husband, in the different countries in Africa we lived in I became the “expert’s wife”, Mrs. Becks. Although I always felt this title to be wrong, at the same time at all these places I was also recognised for my talents as an artist and appreciated as a human being, part of society.

The talented Mrs. Becks in South Africa

The ugly divide that the color of a skin can cause became evident to me in South Africa… I was 29 by then and I just bought my first house in Pretoria. Still, whenever a white South African appeared at our gate, for example for a delivery, I was always seen as the cleaning lady working for the landlord. Why? Because black women were supposed to be doing cleaning jobs in the suburb where we lived. They simply could not believe that I owned that house. So many times they refused to hand over my package, arguing they were only allowed to hand it over to the home owner! You should have seen their shock once Mrs. Becks showed her ID to them.

So, when we moved to the Netherlands, my husband kept his expert title, and me? From the cleaning lady I became the migrant, refugee or illegal. I was shocked to be labelled so strongly by so many in my adopted home. Mind you, I am proud to be called an African migrant, and I am really not bothered when people think I am a refugee as it is not a crime being a refugee.

But I am amazed by the prejudice that is part of these simple words. Despite me being Dutch and contribute to our economy through my business for more than 10 years now, you will be surprised at how quickly people are able to make up their mind about you, only based on the color of your skin!

But I am not harsh to them, a mistake can be made, right? But what bothers me is that still many people, instead of facing the truth, start a rant about that they are allowed to say what they think as they have ‘freedom of speech’. And to make matters worse, start pointing out the fact that I am not originally from this country and that I should know my place. Really?

An extreme story to illustrate this is one time when a dog was barking furiously at me. And the owner of that dog was getting very angry at me and told me in my face that I made her dog behave aggressively because I was black! I was speechless, but luckily my husband was with me and told the woman: “Does the dog see people in color? Only people see each other in different colors, for a dog every person is alike”.

Back to the expert/migrant issue; In fact we are both migrants as 1) my husband is not originally from Amersfoort and 2) his great grandfather settled in the Netherlands from Germany. So if you dig deep enough, you may discover that your roots are also somewhere else. And on being an expert, my talent is to be living for more than 18 years with HIV now, and I am also the first female in the World to play my Indonongo. So even if people try to label me, I know who I am and I am very proud of myself!

People may judge me based on the color of my skin or my African surname, but my actions always speak for themselves! So let’s all agree to love each other for the way we are and focus on using our talents to make this beautiful country an even better place. I thank all Dutch people who are giving their everything to make this happen, especially my lovely husband whom I love dearly.

Peace,

Eliane

I AM… OPEN

Hello my lovely people. It is always great to have something to keep you positively busy during these strange Covid times. So I am very excited to share a new initiative called stories of hope with you. I will be leading this for the coming 4 months.

Just a little background: I was lucky to follow the STEP- UP training organised by the European AIDS Treatment Group (EATG). Together with many other HIV activists and advocates I gained a lot of extra knowledge on HIV. EATG also gave us the opportunity to pitch a project we are passionate about and I decided to share my dream of reaching out to people living with HIV with a migrant background with them.

And guess what? My project was selected and I received a small grant to launch stories of hope! This is such a great opportunity because as HIV stigmafighter I dare to speak out against anyone who stigmatises or discriminates people in my city Amersfoort, the Netherlands and Worldwide.

I love Amersfoort and during my time here, I experienced stigma from healthcare providers, people on the street and employers. It happens everywhere, right now! So I want other talented people that never let stigma stand in their way to join me and inspire people still facing stigma today.

My journey will start in Liendert, an urban area with more than 7,500 people of which 52% has a migrant background. I want to reach out to them and provide a safe space for them to process and share stories related to stigma in our community. Through my partners Het Huis van Bartels, a green oasis in the heart of Liendert, I will work with people with a migrant background and tap into their unique talents to open up and share their story.

And I have evidence this works! What would I have done without my talent as an artist? It helped me to accept my hiv status and focus on positive messages of hope for the hiv community. Even before I was diagnosed with hiv I already shared my talents and I realised that hiv did not change who I am. Through the support of organisations such as hello gorgeous, hiv vereniging and many others, I regained my identity and came out stronger than ever before. Now it is time for me to take action and inspire change in my community.

And you can be a local hero too! If you like my poster, get in touch and join my growing pool of talents through your own poster!

Are you getting excited as well? Join me through my facebook page or the website.

Have a great weekend.

Peace ,

Eliane

Strike a pose for a gender equal world

To my beloved women worldwide,

#ChooseToChallenge #IWD2021

Why do many of us still underestimate the value we bring, why do we struggle to embrace our unique feminine leadership strengths, and why do we remain silent and let our rights be violated?

You are born with superpowers, let your abilities and achievements speak for themselves. Stand up now, start owning our power. Challenge other women when they disempower themselves, call out bias, and question stereotypes.

Your voice matters, celebrate women’s achievements. So, strike the #ChooseToChallenge POSE during International Women’s Day on 8 March 2021 and help us to forge an inclusive world!

Peace, Eliane