Beyond the stigma – my life, my dreams, my choices
By: Wendy Matamoros Zambrana, coordinator of communication at FCAM.
My name is Kenia Donaire. I am 25 years old, I am from Honduras, and I was born with HIV. When I was seven months old, my biological mother brought me to Casa Corazón de la Misericordia, a home for girls, boys, and young people living with HIV, because she was very ill. I never got to know her or any other blood relative; however, I found my family at the Home.
I have over thirty brothers and sisters. I grew up surrounded by the love and care of my aunts and my mother, the Home’s director, who is a mother figure to those of us who have lived and grown up there. Our family is loud, big, and close-knit.
I remember my routine always being the same as a little girl: I took my medication every day, and I visited the pediatrician every month, or every three months, to monitor the virus. [My HIV status] was never an issue until I began school. It was then I realized that not all children received treatment or visited the hospital as often as I did or grew up in a home for children with HIV. I was different, and I felt discriminated against by my classmates.
Going to school was a very painful experience for a long time, but my situation changed after I turned thirteen when I had the opportunity to join an organization called the National AIDS Forum. There I became empowered, and I was educated about HIV, sexual and reproductive rights, human rights, etc. That experience gave my school life, and my life in general, a 180 degree turn.
This knowledge filled me with confidence and a deep desire to share information with my classmates, who discriminated against me out of ignorance rather than malice. When I started giving them information based on science and [human] rights, they changed their minds and even became interested in the subject.
My teachers always supported me and gave me the space and opportunities to give talks because they knew I was a part of the Forum. I remember once they asked me to teach about sexual and reproductive health because they knew that I knew the topic very well, and they thought a peer-to-peer chat would be much more effective.
When I graduated high school at eighteen, I told my mom I wanted to work; I wanted to earn my own money and feel productive. With the help of a close acquaintance, I applied for a job, and I got it. I was happy.
Everything was going great until, suddenly, after two months, they found out. Don’t ask me how. One day, they just said to me, “We don’t need you here because you have HIV.” I felt like I had gone back in time, but it was somehow worse this time around. Even though I’d heard these things happened, they had never happened to me. I got really depressed. I even kept it from my family because I was still processing. It was difficult to understand what had happened, and when I decided to do something to defend my rights, the person I least expected—a very important person in my life who had been instrumental in my [journey to] empowerment—turned their back on me and refused to support me. In that moment, even though I knew the law and my rights, I couldn’t muster the courage to defend them. I collapsed.
My family knew something was wrong. One day, my mother told me, “Let’s go for a ride so we can talk.” And in that ride, I broke my silence. To this day, thinking about this is very painful because no one should be denied the right to have a job and feel productive.
The Health System
In Honduras, many doctors and health professionals violate the rights of women with HIV by sterilizing them without their consent after they give birth. It’s not unusual to hear them say, “If you have HIV, why bring children like you into the world?”
HIV-positive women experience a lot of obstetric violence and, above all, discrimination, as regards motherhood and sexuality. A couple of years ago, PrEP (Pre-Exposure Prophylaxis), a pill taken to prevent getting HIV, became available. When I mentioned this to a health professional and told her it was a great breakthrough that would give young people a safer way to live and find pleasure in their sexuality, she took it very badly and made very derogatory remarks in response.
I haven’t decided yet if I want to have children, but I know I can responsibly make decisions about my sexuality without affecting others because I practice open communication and consent.
The challenge of being undetectable
I have been “undetectable” since childhood—that means, the virus does not actively reproduce in my body—but now that I am a self-sufficient grownup, remaining undetectable has become challenging because many things have changed. I am responsible for my health and for supporting myself, and the healthcare [I receive now] is very different from the one I received in pediatrics. Living as a person with HIV has gotten harder with the passing of time.
With regard to healthcare, I was in pediatrics until I was eighteen or nineteen years old. The way I was treated was amazing; they were empathetic, humane, meticulous, and if I got sick, they made sure I had the medicine I needed. Healthcare as an adult is radically different. They are not interested in me as a person; they neglect me. The best care I can aspire to are general check-ups, and if I get sick, they only give me a prescription. How can we take care of our health if the system that is supposed to guarantee it is failing?
In 2020 we were not only affected by COVID but also by hurricanes Iota and Eta. Back then, I lived in Choloma, where public transport came to a standstill due to the floods. This made it impossible for many people with HIV to go out and get our medication, without which we would die. Fortunately, an organization called ASONAPVSIDAH (Honduran National Association of People Living with AIDS) mobilized its staff, who came to the homes of people with HIV and gave us our medicine. They even offered us the opportunity to get psychological counseling if we needed it, a move that saved many lives.
It is truly a challenge to choose to be healthy and undetectable every day, but I do it because I want to live and fulfill my dreams.
Meeting other Women with HIV
Meeting other girls, young women, and grownup women with HIV outside the Home has been very illuminating because it has made me realize that although we have the virus in common, each woman has different experiences in her home, her municipality, her city, and her country.
In my case, being born with the virus and always having the love and support of an extraordinary family have made it easier to come to terms with living with HIV. However, for a girl who was not born with it and who acquired it a couple of years ago, the journey with her family and community is more painful and marked by stigma. This makes me reflect on how hard it is for people who acquire the virus later in life in relation to those who are born with it. This is a reflection based on my personal experience, but it may be very different for someone else. I know people who were born with the virus and have found the journey to acceptance very hard—in fact, some live in denial. Everyone struggles in different ways, whether they are a transwoman with HIV facing multiple forms of discrimination or a Black woman with HIV who is also the target of racism.
Each person has to live their process and their grief. That’s why it’s so important that we respect the different ways people process their status while offering each other support, acknowledgement, and encouragement.
I dream of a cure for the virus, and I also dream of people living with HIV having access to work, education, and a life with dignity rather than being denied rights and opportunities because of our HIV status.
I dream of acceptance, of the current laws [that protect HIV-positive people] in our country being respected, and of having the support of our families, people in general, and the State.
I dream of traveling, of owning my home, of finishing college, and of starting a business with my best friend.
And I also dream of becoming a teacher who is able to move hearts and change minds through education.