Tag: HIV journey

My sleepy dragon

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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

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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

My Heroes of Hope

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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

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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 want the world to know

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In May 2014 I finally told my secret; I published a note called ”The Hidden truth” on facebook to inform everyone about my HIV. I had been thinking about coming out of the closet for many years and that day I was ready to share my reality and prepared to face a storm of reactions.

Before coming out I told a few friends, neighbours and parents of my kid’s friends. Why did I do that? I was creating my small safe haven, in case the world would turn its back on me. So I was assured that these people would hold my hand and support me! 

Back then I was not sure what reaction I would be getting, but in the end I received a lot of supportive responses. Some people called me, others wrote messages calling me a strong and courageous woman, thanking me for sharing, telling me they love me, and reassuring me I would still be the great dancer and remain who I was.

Then Hello Gorgeous, a Magazine for people living with HIV, approached me if I wanted to share my story as a HIV talent. So in the 2014 autumn edition I became a cover girl for that magazine. I decided to use the magazine cover as my facebook profile picture.

This is when the troubles at my kids’ primary school started;  a parent went to tell the director of my HIV. He asked me to remove the picture, he said ”You scare the parents!”. I told him that if parents have questions, they are welcome to ask me. I added that I could change my facebook profile picture but that the truth would still be out there, in the magazine and online!

That’s when I handed him a copy of the magazine. He looked inside and saw me posing with my Indonongo and said ”You look happy and strong!” I said “That’s exactly my point! Have you ever seen me unhappy? I came to this school with HIV but I did not tell you. There are other parents with secrets as well. I am out of the closet and please don’t tell me to hide again!”

But some parents did not give up yet! A few days later a teacher told me “Mrs Becks, I am sorry to tell you that parents are very worried that your son is going to infect the whole classroom”. I was furious and asked “ Are you seriously thinking that my son is going to infect your classroom including yourself?”

To my surprise he answered that he was afraid that was going to happen. So I told him that first of all he does not have HIV and secondly even if he would have it, how is he going to transmit it to you and the other kids? Is he going to have sex with you all, is he going to breastfeed you or is he going to inject drugs and share a needle with you? By now he was begging me not to be angry, and said he needed to ask this so he could answer those parents.

I was like, well you got your answer. But since it is HIV you are trying to push me and my children down. I will NOT allow it! Tell those parents, whoever has a question, to come to me and we will talk. Shame on you as teacher, not making an effort to look for basic information on HIV. And you are hiding behind the parents while you are afraid yourself.

You all thought this would be the end of it, right? Well, things just got started… Very soon after this, teachers started reporting to us that one kid was suicidal and the other was uncontrollable and was continuously hitting other children. So all of a sudden they had mental issues? But as the school already reported this to the social care system, we were now labeled a dysfunctional family thanks to this school. This unleashed an army of social care ‘specialists’ towards us. I can tell you, there is no way to keep them out of your door and you are guilty until proven innocent!

So, we went through a very stressful period of observations by psychologists, dozens of talks with social caregivers, and hundreds of forms/ tests to fill in. All this to discover if my husband and I were evil. Guess what? They found nothing! And all we got from the school was a simple apology for the misunderstanding…

I felt really down for suddenly being treated as a bad mother, whilst I have always been so active for the school helping them out with many activities including making music. The moment I came out, all went down the drain! That period in 2014 I had to stand tall and fight tooth and nail against this bigotry. But I showed them that no matter what kind of box they tried to force me into, I did not fit!

My secret was out, and nothing was going to stop me now! Luckily my safe haven did its work. Of course, some parents were fully understanding and to date my kids are friends with many of their children.

It is not easy to fight stigma and discrimination, and when it comes to my children I will do anything to protect them. In the end the drama caused by school and the army of caregivers stopped and we walked free after our long fight!

I am glad I came out and I did not regret my decision!

Peace,

Eliane

Healthy New Me

Healthy New Me

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You may wonder why I chose this title? And why I believe this will be my 2021 slogan?

As I shared in roller coaster, as a long term diabetes survivor, I have been dealing with many health challenges alongside HIV during the difficult year 2020. Most of that year I also suffered heavy menstruation, related drops in my iron level and anemia. Because of this I could not exercise regularly, losing confidence when doing simple things like walking or cycling. Sometimes I thought I was about to have a heart attack!

So I gave up the only sport I really enjoyed before Corona came into our world. Do you know what it is? WALKING. Before these health issues I would walk 5 to 7 km daily and 15 km once per week. I liked walking, being in the nature, smelling fresh air and giving me inspiration.

I became really unhappy about my health and I started fantasizing about walking on the road again and wishing that I got rid of the extra weight gained. And on top of that, my diabetes became worse and I needed to increase my medication which was already a lot.

When they told me that I would finally be helped with my bleeding problem, I could not wait to get on the operation table to get control over my life back. Before I entered surgery on 19/11/2020, I promised myself that if I would come back safely and start walking everyday the moment I would be allowed to exercise again.

So, the day after I got the green light from the hospital, I kept my promise and started walking again. I set myself two goals: 1) Get rid of the extra diabetes tablets and 2) reduce weight so I can fit my wedding dress again. Every single day since the green light, I walked at least 10 km and I increased it to at least 15 km per day during the weekends!

Two weeks into my push to regain my health and confidence, I got my first check-up with my diabetes doctor since my surgery. She was very surprised when the results came in, asking me “What did you do to make your diabetes go down so quickly?” I said “walking 10-15 km everyday”. So she told me that I could immediately reduce the number of tablets and that if I would continue to improve, I could even take less.

I was so happy to see the immediate positive result of my hard work and that I am already on my way to achieve my first goal. I can’t wait for the day I am ready to find my wedding dress and start trying if it fits!

Achieving these positive results, makes me more motivated than ever! I am losing my weight, I am gaining more energy, my sex is great, and my husband is happy 🙂

I love the Healthy New Me, with a positive mind doing positive walks.

Peace,

Eliane

U=U life coach

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My dear lovely people living with HIV, I am not sure if we all know what U=U means. If not, I am always glad to explain it once again as it is really important to know U=U and how it can help to break the HIV stigma.

If you have an undetectable viral load, it means that you cannot transmit HIV sexually. I believe this information should be known widely as I have come to realize that there are still people out there that lack this information. So, to highlight the impact of U=U I will share two stories of young couples where U=U saved their relationship.

My first story happened in October last year, when I got in touch with a HIV+ American woman with undetectable viral load who follows my HIV stigmafighter facebook page. She fell in love with an African migrant from Senegal and I just finished to share a post about the U=U campaign in French. Immediately she contacted me via messenger and asked me if I could talk to her boyfriend about U=U.

“I can give you truth, information and respect, but I cannot transmit HIV “

I explained U=U to him through this picture in French. He told me that they already had intercourse and that some time after that she told him about her HIV status. At the time he panicked, thinking it would be the end of the world, especially since he recently was tested HIV negative before donating blood. I was quick to comfort him and inform that she could not pass it on to him because she is Undetectable. I recommended him to go back for another test to discover the truth.

A few days later he got in touch with me again and he was very happy and thanked me for guiding him in the whole process. He send me a small message saying “Hello Madam , I want to thank you for your help. I did HIV test and I am negative. I believe now in U=U”. He confirmed that he will keep on loving her and is planning to start a family with her. I now heard from them and learned that soon they are going to get married! What a happy ending!

My second story is about a young African migrant woman living in the Netherlands. I used to be her HIV peer counsellor and during one of our sessions she explained her worries about having children. She was madly in love but she did not want to disclose her status. First of all, I checked if she already knew something about U=U and she told me that she heard about it but did not understand it since she always communicated with health professionals through an interpreter who does not have knowledge on HIV terminologies. So, I explained clearly to her in French what U=U means since this is her preferred language to communicate. I told her that if she really wants to have a baby with her boyfriend, she will have to tell him to make him understand what it means to be undetectable. 

I also stressed to her to use the fact of being undetectable for her own benefit, and that she should ask him to find out about his status as well before sexual intercourse. The reason for this is because if it then so happens that he is HIV+, they will not later on argue about his status. Being open about status and being undetectable will really help him understand that there will not be any danger for him.

After our chat, she went home convinced to be open about it. On the same evening when he approached her romantically she decided to tell him. He accepted her advice and they went to see a doctor together where he also learned more about how he can support her. He also got in touch with me to hear more  about my and other experiences, which made him really excited to start a family with his girlfriend. Two months later she became pregnant and now they have a son that was born HIV negative.

Long live U=U, it saves relationship and helps to break the stigma!

Peace, Eliane

Photo impression – Stop HIV stigma Show

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Last Saturday 5 December I organised the “Stop HIV stigma Show” in my hometown, Gihanga, Burundi. I believe that by organising these type of events that one day my dream will come true: To defeat HIV stigma in our community! Here you find an impression of this beautiful day.

Pictures of this day are made courtesy of Ingabire Media and Chouman. Enjoy! Peace, Eliane

Here are a few pictures of the fashion show organised by the lovely people of the Fit Fashion Fire Team:

There was a lot of entertainment as well. Multi-talent Bryere in a traditional outfit playing the igondera, gifted Devie with a beautiful HIV stigmafighter button, the brilliant girls of Amazing Team, a group of awesome visuallly impaired singers from Lycee Kanura Band, a young performer from Fit Fashion Fire Team, and our two enthousiastic MCs Emi-Bravo and Chadou:

 

Then there was lots of important speakers during the event. The co-organiser Irene Kundubumwe, the representative of the network for people living with HIV in Bubanza Province Madame Kanyana Daphrose, national association of young people living with HIV Nshimirimana Salvator and Chantal Mbonankira

And to finish this beautiful photo impression, here you see my Batwa friends posing in front of the banner for the show. These were my real guests of honour and had a well deserved frontrow seat during this amazing day in Gihanga. Mwarakoze!

HIV 2020 Conference

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Hello Community Reclaiming The Response,

Yesterday the online HIV 2020 conference officially started. The past few weeks I have been working really hard with a dedicated group of people on my art performance which went live online today. As you know, I was invited to show this in Mexico, but as it was not possible to travel there, yet my art project was selected for an online exhibition instead.

I am so proud of the 7 minutes film called “A HIV Journey – A Story of Hope“. In this film you will see me perform my beautiful poem “It’s my time to fight stigma”. I hope you will enjoy it!

Peace,

Eliane