Tag: hiv/aids

How to build confidence in a day

hivstigmafighter

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

hivstigmafighter

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

hivstigmafighter

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!

World AIDS day 2021

hivstigmafighter

It’s world AIDS day and, although AIDS continues to kill people and people living with hiv/ AIDS continue to face inequalities, there is a growing number of stories of hope.

This week I met two more people cured of HIV. While they highlighted how they experienced love from others whilst battling cancer and living with hiv, they also received hate and judgement. Stigma is still a big issue. Yet, their stories fill us with hope; that one day we will end hiv and AIDS, and that we must begin our journey by ending stigma and inequalities based on gender, income and race.

While conveying their message of hope, I am also very proud to contribute to the fight against inequalities by sharing two new stories of hope today. I know that Anna and Perry will inspire you with their own stories about overcoming hiv stigma by using their talents.

Don’t let hiv stand in your way!

Peace,

Eliane

A bouquet of problems

hivstigmafighter

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 

Ageing positively

hivstigmafighter

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

Memorable summer of 2021

hivstigmafighter

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

My Heroes of Hope

hivstigmafighter

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

I want the world to know

hivstigmafighter

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