We proudly announce that Stories of Hope will be part of the Global Village at AIDS2022 in Montreal, Canada, which will be held between 29 July and 02 August 2022.
So, nearly one year after our launch, succesfully collecting and showcasing the stories of 11 Heroes and distributing exclusive Stories of Hope postcards through various healthcare providers in the Netherlands, Stories of Hope will go global!
At the Global Village we will:
Showcase three original portraits of our Heroes of Hope, and share the Stories of Hope concept with the wider HIV/ AIDS community
Share sample health cards with Global Village visitors and discuss roll-out of more versions in other countries
Organise rapid story telling workshops to record more inspiring stories of talented People Living with HIV/ AIDS visiting the Global Village
Create new Stories of Hope to be launched during AIDS2022
If you will be visiting AIDS2022 and are interested to share your Story of Hope or want to learn more about how you can contribute to reducing HIV stigma in your country, get in touch!
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:
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!
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.
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!
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 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!
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
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!
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!
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.
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.