Note: A podcast of the interview that inspired this article will be available in the next few days.
Doreen is a 29-year-old social media content creator on HIV/AIDs and Sexual Reproductive Health from Kenya, fearlessly living with HIV.
I am a total fangirl of Doreen’s, and I love that we have all these small connections. For example, our birthdays are in Aug, and we both work for GNP+. BodyTalk is currently a grantee for their HerVoiceFund projects in Cameroon.
Doreen is currently in Canada for the 24th International AIDS Conference where she will speak and headline at several events.
My parents discovered that I had HIV when I was 8 years old, but they told me five years later when I was 13. They took me to the hospital, and I found out with the help of a healthcare worker. That was also the same year I started treatment because treatment wasn’t available when I was initially diagnosed.
When I found out, I didn’t see it negatively. It sounded like an opportunity for me. You know, travelling out of town for treatment and spending more time in school because I wouldn’t be as sick so often.
When we are young, we have such simplistic views. Sometimes I think it’s the only one to have, but alas, we grow up.
When my status was disclosed, the doctor made it clear that it would be a life-long treatment. But when you’re young, a lifetime doesn’t seem so long. For the first two years, it was pretty easy. When I moved to Boarding School, however, it got difficult. You know, it’s a lot of shared space, and it’s hard to keep secrets, so I just told my friends that I had a heart condition when they asked about the medication. That got me out of experiencing stigma in high school. If I had experienced stigma then, I don’t think I would have coped better in my later years.
The minute I finished High School, the realization of the real world set in. When people found out I was living with HIV or my mom was, we moved around because she was trying to protect me.
Living as an adult
I wanted to be a radio presenter or an air hostess. My uncle, a lecturer whom I asked for career advice, told me I should find a profession where people wouldn’t know about me. “You cannot do that; if you do, people will know about you”. And for me, I didn’t see why this should be a limitation, but I have seen similar situations, and it never ended well. And I felt like these people are judging me, and it’s a common thing I see with people living with HIV. Like, there is a life you are limited to experiencing like this is the furthest you can go, and you can’t blossom beyond what people want you to be.
But the lady at the Aviation school unintentionally stigmatized me. It’s very funny, actually. I have a scar on my left eye from a Herpes Zoster infection. She said,’ You’re qualified, but you have a visible scar physically.’ I went to another, but the first was the school I wanted to really attend. I didn’t feel like I belonged there.
I went home, and I was mad! My mom has a career; she’s a teacher. Why was I the only one having to suffer? Then we saw this famous man on TV claiming to cure HIV. I told my mom that we should go there. We went there, and he gave us some herbal medicines to drink and told us to believe in our faith. So we believed we were well and HIV-free. Three months later, my mom went to get tested, and she found out she was still positive. So that is how I stopped taking treatment for two years. I was mad and going through like the seven stages of grief. But then I started having opportunistic infections, and my viral load soared.
But I didn’t tell them I was tired or what had led to it. The doctor was a little mean to me; you know how doctors can get. I was in so much pain that I couldn’t even talk back to him.
So I started treatment again, but I was inconsistent.
This continued until 2013 when I did my attachment at the Teacher’s Service Unit. We would encourage teachers to get tested. A lot of people were reluctant, and most people generally are. And my boss encouraged me to go to their classrooms and share my story to help them. I’d always been told to keep my status secret. My first experiences with stigma from my relatives (I used to have separate utensils at home) proved this, so I was hesitant. She told me to write it down, and she will do the rest. It took me a lot of time, but I did.
Then I Read a story about a woman living with HIV and making a difference. So it gave me the idea to write to the editor.
So I sent her an email, but I had no idea what would happen. I thought they would probably put it like an anonymous message in one of their segments. But in the evening, I got a reply asking for an interview, so I had to tell my mom because telling my story meant telling hers.
So I did the interview and they posted it on their digital platforms on Facebook. And people started tagging me and saying, ‘this media house is publishing false stories about you, and so on. But many people contacted me and started sharing their stories via email. This one man explained how he used to sit in his car and drink his meds before going home.
It made me realize how lonely it can be live with HIV when it’s just you with no support system. That’s how people get tired and stop taking treatment.
From then on, I realized I was already out there, and there was no need to be quiet anymore. Many media houses picked up my story and trended in several countries.
Listening to Doreen made me realize how one small action can change anything. It also got me thinking about how sometimes, you just get tired. Young people living with HIV call it a ‘Drug Holiday’. As she says, it will occasionally overwhelm you, but no one tells you this. No one tells you the rest of your life is very long.
I’ve been on treatment for 17 years, and every day is a dance. So I tell people, look at it from the fact that you’re taking treatment today, leave tomorrow alone.’
Stigma and Trolling in the Digital Space
With digital media, it just happened. It was just me sharing my story and realizing that, say, three years have passed, and you’ve been doing the same thing. And people start putting a title on it.
In 2018, on my birthday, I posted a picture with me wearing a T-shirt saying, ‘HIV Positive since 1992″. It trended in Nigeria, and the reactions were just out of this world. People were posting that I was lying, that I can’t look the way I do and have HIV, asking questions like, ‘Would you sleep with her even with a condom?’
It has happened severally. You have to have thick skin and self-control to survive. West Africans show the most stigma and disparity across the regions.
We are still facing the consequences of how HIV was first handled. I have reactions like HIV is not a big deal. But if it wasn’t a big deal, we wouldn’t still be talking about it. Now we have generations of people who have to unlearn information about HIV. That’s why a campaign like this is important.
It’s an interesting perspective that while we encourage people to speak out, they still receive backlash.
Q: As someone out there, do you feel it is easier or more difficult to live publicly with HIV?
A: It’s a 50-50 situation. It takes the pressure off, but it exposes potential partners to stigma by association; it has happened before. And then there are the ones who approach you out of pity and say, ‘You are HIV positive, but I still want to marry you. Is that all you have going for you? Your status?
Q: What are the things you should consider before considering disclosure?
A: Disclosure is a journey, not a destination. Is this person important for me to tell them I’m living with HIV?’ And especially with a love interest, go straight to the point and don’t play the pity card or beat around the bush.
Living with HIV is a rollercoaster. Life does not spare you because you are living with HIV. We spend our lives asking people to love us the way we are when we can’t do the same for ourselves.Tweet
Be kind to Yourself.
What would you like to learn about me?
I was born in Kenya, and I’m currently based in Nairobi. And I will be turning 30 on the 8th of Aug. My age is also a reminder of the years I’ve lived with HIV, so sometimes it’s just that feeling of, ‘now we’re here!’ But it’s still a huge milestone because there was a time my parents got me baptized. After all, they didn’t think I would make it till my 12th birthday. I have 3 siblings; they would have been 4, but one of them passed away due to AIDs-related complications.
I am a social media content creator on HIV/AIDs and Sexual Reproductive Health. I work for the Global Network of Young People Living With HIV, GNP+.
Authors note: Doreen is also one of the 4 creators of the campaign; awesome right!? you could see me fangirling all over the article in italics.
ABOUT THE YOUNGVOICES: ALOUD N’ ALLOWED CAMPAIGN
BodyTalk_Let’s TalkBody is one of four creators across Africa that joined The Access Challenge through the One By One 2030 to fight HIV stigma and promote SRHR knowledge in digital spaces in a fun and creative way starting 20th June 2022.
We aim to reduce the stigma around HIV and reproductive health by amplifying the voices of young Africans through digital spaces. Doreen’s voice is the fourth in a series of five stories of young people we shall publish to show how stigma manifests.
Want to join the campaign? Download the digital toolkit to get started and find us on social media.
Read other articles in the series: