Daphine’s story: Goodbye stigma
It’s nearly three years since Daphine from Kampala, Uganda shared her story in the film, Love a Positive Life, and she continues to go from strength to strength as a dynamic young peer educator living with HIV.
At the time I was Publishing Manager for the Alliance, working with duckrabbit to produce the film. You don’t always get the chance to meet someone again after you’ve completed a story, so it was brilliant to meet up with Daphine this summer after she spoke at the International AIDS Conference in Amsterdam.
She scrolls through her phone, showing pictures of what’s been happening – her and friends at a bridal shower; the house that she and her new family have moved to; and the latest addition to the household, her baby sister.
Now 21, Daphine recently went to Amsterdam for AIDS 2018, where she spoke at an event for Women Deliver, Generation Now: Our Health, Our Rights. Daphine has the “rare opportunity” of co-chairing a session with Princess Mabel of the Netherlands (Mabel van Oranje).
“I think it’s because of the film that I’m getting more opportunities to represent young people living with HIV,” says Daphine. She explains how her first opportunity to speak to an international audience came last year, when she spoke during an Irish Aids’ World AIDS Day event in November 2017. “I was the main speaker, it was such an honour, and the first time travelling and speaking outside of Uganda.
“It was similar to when I talk to young people, as I was sharing my story, my experiences, but this time to a room of adults. They gave me attention.
“The AIDS 2018 event was about sexual and reproductive health and rights of young people and keeping young people healthy and positive. That really energised me.”
It’s the same message that underpinned Love a Positive Life, and Daphine continues to be a peer educator and a role model. It’s about both “providing the youth with the information they need to remain negative” and for people living with HIV to “accept their status and live a fulfilled life”.
Dealing with disclosure
For young people, whether to disclose their HIV status, and if so how, can be a major anxiety. “I used to think that when this person gets to know my status they may not love me because I’m positive, and maybe he’s negative,” says Daphine.
“Disclosure has become a very easy thing for me to do because of my video. It has taken away all the stigma and the stress that I had.” She explains that if she meets someone she may want a relationship with, she needs to know if they can understand her and cope with her HIV status. She tells them to watch the film, as it has everything they need to know.
“Most people I’ve told haven’t turned their back on me,” she says. This extends to friends as well as potential partners. “They really thank me for disclosing.”
Daphine acknowledges that most young people don’t have their own film to show people and in her role as peer educator she advises others. She’ll talk through various scenarios and ways to bring the conversation up, depending on the person. She insists that disclosing your HIV status is essential if an intimate relationship is going to happen.
She says: “In order to be happy with your partner, you should let them know. If someone doesn’t know my HIV status, how do I think he will feel if he gets to know from someone else? So I think someone has to know about me and I need to know him very well, so we can go on with our sexual life.
“In most cases this guy also has to go for testing. I may tell him my status and he may think he’s negative yet in actual fact he’s positive because he hasn’t tested before. I’d give someone the information I have and then later take them for counselling and testing.”
Disclosure was also a key issue for Daphine after her mother’s death. She was living with relatives, but it didn’t feel like the close family environment she craved. She was unaware that one of her mum’s close friends was trying to track her down until he found her about a year later, and invited her to live with him and his wife and child. “I really needed a family,” says Daphine.
“I said yes, but asked him to talk to his wife about my status first. I would never want to have problems, for example someone wondering why I’m taking medicines at the same time every day. He talked to her and she was fine straight away.”
Fast forward a few years and this is still Daphine’s loving home. “If I don’t have something, I can ask. If they can provide they do provide, if it’s not available then it’s not available. They are my parents now.” They are also parents to a six-year-old and a one-year-old and Daphine is loving her role as big sister.
Dispensing advice and ARVs
Daphine is also proud of her role as volunteer at MildMay pharmacy in Kampala. When she was filmed for Love a Positive Life she had recently begun her volunteer position, “I was counting pills then. Now I dispense ARVs [antiretroviral medication].”
She is committed to a career within the HIV response, particularly supporting young people. “I still help out in MildMay’s youth clinic and I’m considering going back to school to study counselling,” she says.
“When the Alliance programme Link Up ended it didn’t mean that the training they gave me also ended there, I kept giving out the knowledge and empowering other young people, and now I have different opportunities from different programmes and projects.”
One programme she has worked on is the Alliance’s current youth programme READY, “I went to support the peer educators – sharing what I learned from Link Up.
“Next I’m travelling to Jinja, Uganda with another project. I’ll be there for three days talking to young people age 16-24 living with HIV.”
Travel is an important part of the work for Daphine, both for sharing and for learning. Returning home has its rewards too. “The new baby, the little one, she loves me so much,” Daphine says. “She’s missing me now. Whenever I come back from a field visit for peer outreach I get the biggest hug!”
Love a Positive Life, produced for the Alliance by duckrabbit.