U=U life coach

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

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!

Stigma at times of COVID-19

Before we even heard of COVID-19, people living with HIV or AIDS were already facing stigma and discrimination as I experienced and shared with you regularly with healthcare providers throughout the years. Many more people started facing stigma when COVID-19 came along in many ways, and this made things for people living with HIV or AIDS even worse.

I would like to share my experience during this period and how I overcame the stigma and help the healthcare provider to open up her eyes and take into account what her actions can mean for others. In January I needed to do a CT scan and they happened to find a something on one of my lungs. For my entire life I never had to see a pulmonologist (lung doctor) before, so on 12 February I met one for the first time.

I was nervous and curious the same time. I am used to visit hospitals for many checks up and doctors always welcomed me through a hand shake. It was at a time when in the Netherlands there were no rules yet on how to behave in these different times. So we all still went about our business as usual and every doctor I met was still shaking hands. So I had quite a big expectation of warm greetings from this doctor since it was our first meeting.

When I gave my hand, she rejected me by saying “Oh no no, I don’t shake your hands, there are many viruses around. I don’t dare to be infected!“ I immediately felt confused and started thinking and asking myself what she meant by many viruses? I don’t have Corona, I don’t have flu, the only virus I have is my HIV. Since she read my medical file she knew what kind of virus I have. So this made me start doubting her words. Why would she talk to me as if I am very dangerous to her? Did she mean that my virus would jump to her by shaking hands? I really needed to find the reason behind her behaviour.

A week later some hospitals started introducing information on not shaking hands. But there was still not yet a strong medical protocol in place. So I went back to see my HIV Doctor, and this was also a new person as my previous doctor had left recently. So on 28 February I met her for the first time, and I was not expecting to shake hands. But, when she introduced herself, she said “Hello, I am not suppose to shake hands but since this is our first meeting I make an exception and I feel comfortable about it”. This is when I explained my experience with the lung doctor and how hurt I felt. So, she advised me to better talk to her again.

Afterwards, this whole episode with the lung doctor kept on playing in my mind; how she did not show empathy during our conversation, and how she also failed to really answer any questions on the diagnosis. I went completely crazy, and I decide to see my GP first to explain the results of the scan better to me. My GP explained very clearly and then I shared with her how I felt about the lung doctor, and she also advised me to go back and talk.

I waited until May, and I finally got an appointment this week. I was very calm, and not angry but curious. I told her that the main reason I came back was to talk to her how I felt last time we met. I asked her what she meant by saying “Many viruses”. I explained that by the time we met I did have only one virus, HIV. That sometimes I get discriminated in hospital because of that. She was completely in shock and said “I am sorry I meant to say flu, corona virus, not HIV”. then I said “Well, you should have been specific, because telling somebody with the HIV virus that you don’t shake hands because of many viruses, from experience I immediately understood that you meant HIV virus since I did not have corona, or flu”. She said 5 times sorry, “I am sorry I was not aware that people can get it wrong when I say virus. But you are right, I should have said flu or corona”.

I explained that we often face stigma as some people still believe they can get HIV virus by shaking hands, that what she said really bothered me. But that I did not want to accept this, and I needed to find out what she meant. She thanked me and said “You are a strong woman to come back and talk about this with me, you taught me a lot and I am going to use it with the next patients”. I told her that I did not do it for myself, I want to prevent this from happening to other patients like me. Not everyone will dare to challenge a doctor on this, especially my Africans migrants. And they will go home and feel bad, confused and get depressed by this. But I choose to clear my path before I move on. I need us to be clear and make sure we understand each other.

An important lesson learnt for her is that language matters. I am sure next time she will take into account which words to use when communicating with patients like me so then they don’t feel offended!

Peace, Eliane

Be my messenger

Dear Santa,

I wanted to ask you a favour for this Christmas season. As a woman living with HIV for 17 years I am grateful to live. I look at the future positively. Only sometimes I fall back when I experience stigma with health care providers or when I hear that in some places pregnant women have no access to HIV medication for themselves and their yet to be born children.

It hurts to hear that in so many places there are still pregnant women who do not have access to life saving medication. We should no longer have children born with HIV. So last week when I organized a Meet & Greet at the pink statue of the Crying Woman here in Amersfoort, my purpose was to get an impression how people were touched by the message behind the statue and to hear their thoughts on issues such as access to medication for all, especially pregnant women.

The understanding of the people I met and their support for the issues I raised, especially fighting for universal HIV medication access for pregnant women, was overwhelming. So I asked people to help spread my messages. Some even wrote and shared their own messages:

I am very grateful for the support I received that day. It shows that people finally understand how hard it is to live without having access to medication and fear that your baby risks to be born with a preventable condition.

The Meet & Greet gave me a lot of courage to keep fighting in 2020. Dear Santa, when you give presents tonight, I want to ask you to include these messages to everyone .I know you can reach so many people in one night, including the decision-makers. Let’s see the positive change in 2020.

I wish everyone a merry Christmas and am positively looking forward to 2020.

Peace,

Eliane.

South Africa here I come

I cannot wait for September to finish, so I can finally visit South Africa with a purpose after 13 years. Many African people may think why exactly I choose to go back? Well, I have a very positive reason. I believe in change, as I have changed the past few years by coming out of the closet and became a HIV stigma fighter.

I would like to reach those people that never got a chance to speak out about what stigma does to them and reach those who are still afraid to find out about their status. I want to share my living story with passion.

I have beautiful memories of South Africa. It has taken me so long to revisit the country that gave me my beautiful son and say thank you. Every year, on his birthday I get all those sweet memories back. Very often I think, what if I never managed to get to Pretoria for my HIV diagnosis and treatment? Was I going to last this long and reach my dreams? Well, thanks to my good health provider in South Africa, I did it! Dr.Mogotlane, you were my savior, you treated my diabetes, HIV and followed up on my pregnancy! Every day, I am still very thankful.

As I was still not open about my status, back then I never managed to meet any other person living with HIV. It was a taboo and no one did really dared to talk about it. This one of the reasons why I want to go back; Saying out loud and proud that being an HIV positive is not a curse, not a punishment from God and that it is not a crime. That you can still fulfil your dreams such as having children or living a healthy life. I want to share my story as it is a story of hope, encouragement and compassion.

So as HIV stigmafighter I want to show South Africans how grateful I am by sharing my stories during my performance with my Choir DUZE in the Townships. Living with HIV, I am proud to sing the solo of INCULAZ’IYABULALA (AIDS/HIV is killing us) and thereafter share my story with the people. This is how we breakdown stigma. In the end, people should know that with HIV you are still a human and all your talents and knowledge don’t go away.

Get ready South Africa, I am coming back with Positive vibes. Let’s sing, dance and get HIV education.

Peace, Eliane