I am an African woman of almost 52 years old and I have been living with HIV for almost 20 years. I consider myself to be a happy person. I love to laugh and enjoy dancing, I am a family person but most of all, I put effort supporting others, who are vulnerable.
Some years back I fell very sick and it all started with pain in my stomach. Because of that I went through many operations - 8 in total. My health was getting worse by the day. One day the doctor suggested that we should check my blood for HIV and yes, the results came back positive. I had Aids.
When the doctor told me about my result my first reaction was: “Thank God for that, now at least we know!” And I immediately asked him: “So, what’s next?" In a low voice, he said: “We will try to start with medication and hope for the best, but you are very sick and weak.”
I was hospitalized during 3 years and what kept me fighting were my children. Today I am dancing again, running up and down, helping others and looking forward to live for 50 more years to come.
After coming out of the hospital after such a prolonged period I felt as being given a second chance in life. I had a purpose to live and it was time for me to give something back. I wanted to support people who are in need and who have gone through the same I went through. In 2007 I started a foundation that supports women living with HIV/Aids, child mothers, widows and street children in my home country. Am also socially active in organizing open discussions about sexual health, sexual diversity and many other issues that women face in everyday life. Even though I am doing all these things, I am still being stigmatized because of my HIV condition and it is very difficult to come out and just say to the world: “Here I am, living with HIV.”
HIV is still a taboo in my surroundings and everywhere you go people still lack information about it. When you tell someone that you have HIV, they look at you as if you are dirty or you have been sleeping around. It makes it difficult to open and talk about it. I am happy that my children and the rest of my family know and they accept me for who I am.They are millions of women around the world living with HIV, yet many feel lonely. The stigma and taboo are the reasons why many are isolated and some can't even tell to their loved ones.
The weekend of powerful women
Early November 2016 I spent the weekend among other women living with HIV. We met for a Vrouwkracht (Women Power) weekend in very nice and healthy environment in a forest area. The weekend was organized by Hiv Vereniging. We were together for a whole weekend, so that we could work together on our dreams, that one day women living with HIV may live freely in a fair world, where they are loved and respected, free of stigma, violence and discrimination. The specific aim of the workshop was empowerment: to develop positive women's advocacy skills and increase our confidence, so that we stand up for ourselves and may be influencing decision-making someday.
On Friday, I was nervous as this was my first time to meet so many women and share our stories about our HIV experience. Since I knew I was infected with HIV, I have never bothered to think about it much and never talked so much about it either. I survived, overcame my illness and I now live my life like normal person. So, this weekend I was going to sit with different women. And we are going to be talking about HIV….. But obviously, it was just my anxiety.
Most of the participants arrived and the room was filled with laughter and then in few minutes it changed, because we had to come to the reality to share about ourselves and what HIV meant to us in our daily lives. There were tears and sometimes meaningful silence. You could feel the power of each woman. Just looking around, it was obvious that we are a very diverse group of women, aged from 20s till 50s and from different countries, cultures and believes. All these women from different background handled things differently. It was not easy to hear how the HIV has impacted some of the women in their daily lives.
The three days spent together were filled with lovely discussions, sometimes things got very emotional and tears were shed and quickly tissues were passed around and hugs and spontaneous gestures of support abounded. We did a lot of sharing, lot of thinking and plenty of action was planned.
We are not alone
I want to thank Hiv Vereniging to organize a weekend for women living with HIV. The idea is for us to come together and share our experiences and talk about the challenges women living with HIV around the world are facing. And, to know that we are not alone. Don’t judge me! But let’s come together, where we find the grace, peace, healing, freedom and love.
Listening to different stories and challenges, I felt lucky to be in midst of strong and inspiring women. Women, easily misjudged because of their HIV status and because of that, many find themselves feeling alone and frustrated. Sometimes it's sheer joy and sometimes it just gets too much. It feels like life itself, it is a rollercoaster. What I learned in life is to embrace the journey. And I could share this with the other women.
One says, “I am a mother, a wife and a woman, who wants to be empowered and support empowering other women”. But then in that same moment she breaks into tears. Are those tears of sadness or of happiness, you wonder? So many mixed emotions come by, but we support each other to ensure that nobody is alone. Living with HIV can be a very lonely place when you can't be open about it. I personally want to feel that people treat me the same. I am still me! I have not changed and I do not wear the cross that says “HIV”. Why do people judge me? Why can’t I be accepted and respected the same way as someone who has cancer or any other chronic decease?
More stories: I can’t tell at my work place that am living with HIV because I will be discriminated, I may even lose my job. At school my children are discriminated because their mother is living with HIV. Friends leave me because of HIV and now who can I tell? And who will accept me? (“Maybe then I should die within inside me”).
Thank you for the opportunity of meeting other women with HIV, who can listen to me, support me, understand me, encourage me, motivate me and, treat me equal. My fellow positive sisters give me strength to fight and decide how I live my life as a woman living with HIV. I hope that, as sisters, we can encourage each other, share our wins and failures and share our lives, as positive women who are ready to be vulnerable to bring a change in the world.
Mary