A true warrior

For being a warrior there is no need to be in a war of guns and fight until you win. I have been in many different wars with and without gunfire. I am still fighting one long war, which I call the “STIGMA WAR”.

I am a warrior in the war against stigma, discrimination and ignorance about HIV. In this war I break the silence and the shame about being HIV positive. And I am ready to win this war because I fight it with compassion.

Yes, I am a warrior in this life full of challenges. If I would feel pity for myself, hate my life, it would not have made me feel better. But when you love life, it will certainly love you back! So I choose to do what is best for me. Breaking the silence, fighting for my rights is the best thing I can do. And I continue to do so.

Please join me in this war against STIGMA and DISCRIMINATION. We will win. Let us put our energy together and break the silence. Let us speak out and loud. Let our voices be heard!

This life with HIV has many challenges. It is like the weather: There are rainy days, cold days, warm days and you adapt to any weather condition. It is the same when living a positive life. Faced with any situation, we have to find a suitable solution. If I turn around and look back at everything I have been through, I clearly see that I am a warrior. And I am not afraid in this fight, I am not afraid of what people may say or how they may treat me. I broke the silence. And in the end the victory is on my side.

I just want to breathe my emotions.
I just want to smile like the warm sun.
I just want to laugh all day like running water in a river.
I just want to share my victory with the world.
Forget about the time I used to cry like summer rain.
Forget about the time I could not choose between right and wrong.
Forget about the time I was silent because of fear of being hurt.
Forget it. It is over now; I just want to breathe my emotions!
From now on I will joyfully sing like a morning bird.
So that people all over the world hear my voice saying:
“Hey you, stop the stigma!”
I am a warrior in a war without guns.

Peace,
Eliane

HIV medication exchange

I would like to share an article (in Dutch) published on 9 Jaunary in the magazine Hello Gorgeous. It is about a topic that I am really passionate about: Ensuring that unused HIV medication, still in its original packaging and meant to be destroyed here in the Netherlands, reaches people with HIV in places where there is still no access to life-saving medication. In the text below you will find the translated text in English:

Ready to be sent to people without HIV medication in Romania

Hello Gorgeous: “How did you get this idea to collect HIV medication for Romania?” Eliane: “Last year I met a Romanian woman during a meeting of the European AIDS Treatment Group in Brussels. She was looking for people who wanted to donate their HIV medication to pregnant women with HIV. We became friends on Facebook and kept in touch. When she told me that these women are regularly without HIV medication, I was heart-broken. Without HIV medication they risk their children being born with HIV. I don’t understand this is still possible in Europe. “

Hello Gorgeous: “What are you doing to tackle this?” Eliane: “I am continuously asking people in my network, via messages and emails, if they have any medication left. Often, this happens when people switch medication, then they are left with unused medication. I collect this, compare it with a list I get from my contact in Romania, and then I send the required medication to Romania. It hurts me, to see we are so committed to climate action, for example by recycling, but that we are still throwing away perfect medication which can save lives elsewhere. This only happens because our rules are such that medication prescribed for one person cannot be transferred to someone else.”

Hello Gorgeous: “Have you also approached pharmacies to help you?”. Eliane: “Certainly, I talked to a number of pharmacists here in Amersfoort. They told me that they used to collect medication in the past but that this ended when health authorities required them to stop this. I always tell them to give it to me secretly. It is so difficult to accept that unused medication is destroyed while we can find a purpose for it. Meanwhile, we still worry about someone dying every 40 seconds of the effects of AIDS due to a lack of access to medication.”

Hello Gorgeous: “What can people do if they want to send you their unused HIV medication?” Eliane: “If people switch their HIV medication and still have unused supplies at home, they can contact me. Send me a message via hivstigmafighter@gmail.com and you will hear from me.”

This message gives me courage to continue HIV medication exchange

Hello Gorgeous, thank you so much for publishing this article. Already I have been approached by people, asking me how to send their left-over medication to me. Many people living with HIV in Romania will forever be grateful to you.

I really hope to expand this project in 2020, so more people with HIV in Romania or elsewhere in this world can continue using life-saving HIV medication even.

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.

The crying woman is in Amersfoort

Today, together with councillor Tigelaar, I unveiled the crying woman here in Amersfoort. It is such an honour to have her at the Lievevrouwekerkhof in the heart of lovely Amersfoort. Again, a great moment to share my story on the importance of fighting HIV stigma. The story continues. Where shall this beautiful statue travel next after a week in my hometown?

Peace,

Eliane

Unveiling the crying woman on World Aids Day 2019

Today, together with Dutch celebrity Angela Groothuizen, Mark Vermeulen the director of Aidsfonds, and 11-year-old Jacky, I unveiled the statue of a crying woman. She sheds one teardrop every 40 seconds. This symbolises the fact that every 40 seconds someone in the world dies of AIDS. It was a great honor to be part of this. These pictures speak for themselves:

Here you can read my full story in Dutch. The text is in Dutch, and the movie is in English. It was a memorable day. I will keep on fighting!

Peace,

Eliane

Stigma & World Aids Day 2019

Look at this young man, left to fight alone in this World. What do you think happen to him? I blame stigma. HIV stigma killed both his parents when he was 14. I feel sad every time I look at him.

HIV stigma, I am very angry at you! I will never forgive you. Of what you have done and continue to do to me and others.

Remember, whatever level of HIV education you have received, you are still at risk. Even those educated are still afraid of being judged: Many of us still do not want to be open about this terrible disease. When she was sick, my cousin’s answer was “I have got malaria”. That was her escape route.

Those not well educated yet, sometimes continue to uphold dangerous beliefs and practices. They think the disease can be ‘cured’, actually by putting other people at risk. They can make the problem bigger instead of solving it.

Sometimes I wish there would be a good peer education system. It helps the educated and non-educated to hear positive stories. It helps to understand, to share, and to change positively. I know the power of peers as I see it work here in the Netherlands.

I wish that there is no stigma. That in every corner of the world there a place where people meet and share. And where people can get access to their medication.

But the World is unfair, in many places in this World children still lose their parents. How can we end HIV/AIDS when people do not have access to education and treatment? As HIV stigmafighter, I dedicate my life to educate  people. I empower people living with HIV, especially the Young Generation.

During World Aids Day we honor the dead by fighting for the living.
I will fight for those deprived of chances and a right to a healthy life.

My hope is that one day in the midst of the darkness that is stigma, light will persist.

Peace,
Eliane

South Africa: Sharing my learning

I would like to share what I have learned during my recent two weeks in South Africa.

During the apartheid regime (1948-1994), there was so much hate between white and black people. Black people were oppressed and white privileged. There were many restricted areas where black people were not allowed to enter. Thanks to many freedom fighters such as Mandela apartheid ended in 1994. Sometimes you will still see reminders of the apartheid era on streets or in musea. It is when you enter the Townships, you will definitely get an idea of how underprivileged black communities were at that time, and are actually still struggling to date. 

When I was living in South Africa between 2004 and 2006, already it was not the same South Africa as during the apartheid regime. It was the Rainbow Nation, where you could see many Africans, also many from other African countries, living alongside South Africans. History taught us that South Africa has gained its freedom with the help of many other African Nations. 

Even then, the Rainbow Nation was not yet perfect and xenophobia was on the rise. I experienced this myself once when I was on my way home in one of the minibuses in Pretoria; I spoke English and the driver asked me to speak my mother tongue. He was hoping I would speak Zulu, but instead I spoke Kirundi (from Burundi), a Bantu languages just like Zulu. He was furious as he could not understand what I said, so asked in English what I just said. I told him that not all Africans have to understand each other mothers tongues but English can help us both. He was angry and he said ”No woman speaks to me like that. Get out of my bus”. None from the passengers stood up for me, they all kept quiet. He brutally stopped the bus, kicked me out in the middle of nowhere and drove off. From that time I did not feel safe anymore and, although I loved travelling with public transport, I stopped using these minibuses. 

Fast forward 2019, the South Africa as I knew it has changed even more and is now openly facing many challenges that have become more apparent, especially in the Townships. During my recent trip I heard about a lot of social problems such as child abuse, gender-based violence and poor access to health care. As a result many people reported incidences of rape, trauma and HIV/ AIDS, to name a few. 

The impact of these social issues become more visible to all. When I was walking on the streets in Stellenbosch I saw a message in front of a church reading “Women and Men are equal in God’s eyes. So, in whose name do men rape?” This made me realize that there is a big change. The fight to break stigma and taboos, and making sure that social problems are felt as a responsibility to solve by all, has to be done by all. So this church is taking the lead role in supporting people that are victims, and opening up the conversation on issues that were still hidden until now. 

So, whilst South Africa has now moved on since 1994, the end of apartheid, there are still many problems that remain untouched. They are now felt by many young people that are born after apartheid ended, born into a South Africa of hope. It is their voices, the children of people that fought to end apartheid, that must now be heard as well. We must support them in their struggle against new challenges whilst also making sure that apartheid can never take root again in South Africa. 

I want to give a voice to these young people of South Africa, so they understand I stand by them when fighting challenges around gender-based violence and access to quality healthcare, in the same way and with the same energy as we supported them in defeating apartheid. Whilst I was given some space to share my story on HIV and I felt this was well appreciated, I still felt discomfort at some people within my own choir to let me share my story on HIV stigma in selected communities in South Africa. 

Dealing with stigma, whether related to HIV/ AIDS, gender, age or disability, is a major social challenge in South Africa that must be addressed. Any attempt to break the taboo should be embraced instead of discouraged. I recognise I am not part of an anti-HIV stigma choir, yet I have also learned that by staying too much focused on apartheid we will miss out. To connect to this generation of people in the townships, we must also talk about key problems that reflect their daily reality! The world is rapidly changing and we must update our message to the world, telling the real life story of South African communities, especially in townships. Our message can be brought in many ways; Through this blog, by standing up in a community, or through the art of singing! 

And for US, Africans, we need to put our energy together and fight like our forefathers and parents did to fight for freedom and ensure all people shall be treated equally in equal circumstances. 

United as Africans stop violence amongst us, respect each other and share love! 

Peace, 

Eliane