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 

Memorable summer of 2021

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

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

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

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

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

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

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

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

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

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

PEACE,

Eliane

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