Dear HIV Vereniging, Today you exists 30 years. I have had the pleasure to work with you on many projects and campaigns over the past years. I hope that during the years to come we will be able to keep on fighting HIV Stigma together.
Today I was invited to celebrate International Women’s Day in Culemborg. Foundation Intercultureel Vrouwen Culemborg (DIVC) organized a party with the theme ”Freedom”. The event started at 13h with a speech from the municipal councillor of culture. Then a poem read by a poet from Culemborg. Throughout the programme there were many different performances from different cultures, choirs, bellydancers and fashion shows.
I was there to share my story: HIV and Freedom. This was a story of living through 17 challenging years with HIV. You know that I am always ready to take any opportunity to fight HIV stigma. In a way, these 17 years have also been a walk to freedom and that is what I wanted to share:
In short, my story covered three stages towards freedom:
A new beginning when I went on ARVs and was able to fall pregnant and have healthy children
Out of the closet: When I finally was open to speak about my status
HIV stigmafighter: Adressing inequalities and stigma around HIV
I stressed that you cannot gain freedom without a fight. And that is why I am a stigmafighter. To fight the stigma we still face everyday, lift people out of isolation because when you are hidden you are not free!
After my story I ended with my poem the mask. People approached me with compliments and told me how my story touched. Some women said they never talk about HIV at home, and seeing me being so open about HIV and sharing my ups and downs, and my success so far, they told me “You are a Superwoman”. We finished with a very inspiring female DJ from Morocco. Wow, she can really sing and DJ at the same time. All women from different cultures went crazy on the dancefloor. Any song she played, we just danced and were happy to be together.
Us women face different challenges in our life. Even when we think we are in a free country, we still need to fight for our freedom. I am glad I was able to inspire more women in Culemborg. For those that were there: You are all my Superwomen!
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.
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:
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 firstname.lastname@example.org and you will hear from me.”
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.
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.
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?
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!