"Let us remove the power from this very tiny virus and live our lives beyond our diagnosis."
So says IAS Member, Doreen Moraa Moracha. Born with HIV, Doreen found out about her status only when she was 13. Stigma and treatment fatigue made her keep it a secret and stop treatment for two years. Doreen is now a social media influencer based in Nairobi, Kenya, and founder of the I AM A BEAUTIFUL STORY YouTube channel. She uses social media platforms to show people they can “live their best lives”, even with an HIV diagnosis. She has also been working with IAS – the International AIDS Society – to develop the Youth Hub, a digital space for young change makers living with and affected by HIV. This is Doreen’s story ...
“When I was born, my mom did not know she or I had HIV. I started getting sick from my sixth month. My parents and relatives assumed that I was bewitched because I was always sick.”
How did you find out you were living with HIV?
I was born with HIV, but I did not find out until I was 13 years old.
When I was born, my mom did not know she or I had HIV. I started getting sick from my sixth month. My parents and relatives assumed that I was bewitched because I was always sick. But they did not know what was ailing me. When my little brother died, they thought, “They were both bewitched and now one of them died.” It was only when I was diagnosed that we realized he had died of AIDS-related diseases.
When I was eight, I had herpes zoster. At the hospital, I was tested for HIV; that is how my parents found out I had HIV. The doctors told my parents, “We’re not going to give her a long time to live. If she reaches the age of 12 and can access medication, she will be okay. For now, just take her home and love her.” And they did. But they didn’t tell me I had HIV until I reached 13 and could access medication because this was when ARVs became freely available in Kenya. Before this, HIV medication in Kenya was for rich people only: it was expensive and they shipped it from Europe and America. A normal person could not afford it.
You tried alternative treatments at some point. Can you talk about that?
Alternative treatment comes with a hope tag so that people buy into it easily. In 2011, I fully understood what it was like dealing with HIV and facing stigma – from society and myself. I did not like the idea of being on medication for the rest of my life; I had treatment fatigue. On TV, I saw this man who said he had a cure for everything. I convinced my mom, and we went to him in Tanzania. We drank a cup of his medication. Then he told us, “I don't have a cure. The cure is in your faith.”
You stopped treatment for two years. What changed your mind?
Opportunistic infections brought me back to the scientific method. The more you stop medication, the more intense they get. I got three infections: pneumonia, herpes zoster and TB. I had to go back on medication.
“I kept my HIV status secret because when I found out, my parents told me, “Never tell anyone you're living with HIV.” I'm not sure how it's perceived in the rest of the world, but in sub-Saharan Africa, it is a secret.”
You lived with your HIV secret until you finished college. Why?
I kept my HIV status secret because when I found out, my parents told me, “Never tell anyone you're living with HIV.” I'm not sure how it's perceived in the rest of the world, but in sub-Saharan Africa, it is a secret. People secretly take their medication and secretly handle their status. So, it becomes a burden to you. And when you're dealing with self-stigma … you kind of just feel that people are stigmatizing you, but it's not them. It's you because you have been conditioned to hide it.
Why did you go public in 2015?
An interview I did for a small paper was shared on a large media company’s Facebook page. I made the mistake of leaving my email at the bottom of the story. I received a thousand emails from people living with and affected by HIV, telling me how they're taking their medication in secret. I realized that we were assuming that taking ARVs is all that people living with HIV need. People also need to speak about it. I had to ensure that this conversation was normalized at all costs … So, I'm showing you my life because you can also live the same life without being limited by taking medication every day.
What is your message to other young people today living with HIV?
My message is: it's a tough journey. It's not easy, but now we have hope. Now we have medication. Now we have the power to live and become our true selves. Don't let hate limit you. I always say HIV is a tiny virus, but we're giving it so much power. By stigmatizing ourselves and not taking our treatment, we are giving it so much power. Let us remove the power from this tiny virus and live our lives beyond our diagnosis.
Tell us about the youth platform you're developing with the IAS.
We're developing a digital hub because every other young person is on social media. We also saw what COVID-19 did for us. We stopped going to the hospital to pick up our medication and access our support groups. The new normal is Zoom and, sometimes, you are in a place where it does not work.
This Youth Hub is going to connect us. It's going to even accelerate the HIV response, especially among young people living with HIV and young people involved in the response. It's going to create leaders and professionals. A lot of us have been advocates of HIV by just winging it. Right now, we are being moulded to become better, brighter individuals. You will be able to get in there, get scholarships, learn; just live your best life and live beyond your status.