Ethermac Exchange-HIV crashed her life. She found her way back to joy — and spoke at the U.N. this week

When Bupe Sinkala was diagnosed with HIV,Ethermac Exchange she didn't know what to do. She was planning her wedding – and decided not to tell her fiancé at first. It was, she reflects, "a dark moment. I was scared of being rejected, of being judged. I thought it was a death sentence.'

She didn't know how to manage the disease, she didn't keep up with her drug regimen and her weakened immune system made her vulnerable to a tuberculosis infection. She got very sick, and her husband left her.

Then her life took a dramatic turn – this time for the better. She learned that the community health organization mothers2mothers was recruiting HIV positive women in her home country of Zambia to become community health workers.

That was back in 2013. On Monday of this week, 35-year-old Sinkala stood at the United Nations General Assembly before an audience of ministers, policymakers and charity leaders to speak up for her new profession. As a community health worker, she's part of an underappreciated, often underpaid and yet critical corps of professionals who make sure people get the health care they are eligible for by sharing information: where it's offered and how to get it.

We spoke to Sinkala about her experiences as a community health worker, how her HIV diagnosis changed her life and what she spoke about at the U.N. General Assembly. This interview has been edited for length and clarity.

You are open about being HIV positive and how that has impacted your life and ultimately led to your role as a community health worker. Can you share your story about what happened after your diagnosis?

I learned that I was HIV positive when I was planning my wedding. Out of fear I waited a bit of time to tell my husband and got ill. We went to the hospital to get tested but because we didn't go back to get more counseling he left, and it was devastating. It destroyed me.

What turned things around for you and how have you managed living with HIV?

What gave me strength was the support I got from my family. They were amazing. They really made sure I got the care I needed and that I got professional help. Then my aunt told me about an HIV activist who was living positively and open about her status. She was helping so many people just by telling her story and that gave me hope.

Later I saw the job opening for mothers2mothers on the Facebook platform Go Zambia Jobs. They were looking for women who were positive for HIV and who had at least a high school education. Once I was employed and trained, I learned how I needed to take my drugs and have my viral load checked. My viral load was very high at first, but now I have reached the stage where the virus is undetectable. I also learned that I had cervical pre-cancer cells, but because I got the right information at the right time, I was able to go for screening and be treated.

Now you work to help other people take charge of their health. What does it mean to be a community health worker and what do you do on a daily basis?

I work both at the clinic and in the community. Number one is to be a role model. I am a community health worker that is living positively with HIV. What I do as a community health worker is offer support to my community.

Back home in Zambia, our clinics are understaffed, so community health workers work alongside doctors and nurses. At the clinic, I educate women about HIV, tuberculosis, cervical cancer, malaria and other health challenges they may be going through.

In the community, we take our services to the people and this helps in retention. There are times when maybe a client is unable to come to the facility for their drugs. So we go to them to make sure that they're taking their drugs correctly.

What do you do when you first meet someone who has just tested positive for HIV?

If I meet a client that just tested positive, I will visit them maybe two weeks after they've been linked to care. We have a conversation about how they are responding to medication, how they feel about their status and educate them on the importance of retention, coming back to the facility when they run out of drugs and to get more information.

I tell them, don't be afraid to ask all the questions you have until you are sure you understand. So that you don't look back in regret and say, "I should have asked, I should have gotten the right information."

And then if I am going to see a mother that has a family, I also make sure to see the partner and check if they have been tested. Most men in Zambia will not take it upon themselves to go and test, so you need to push them. I think it makes it easy when I go in the community where they're comfortable and don't feel judged like everyone is looking at them.

Have you had any interactions with your clients that stand out to you as being particularly impactful and memorable?

One time, a client came to the clinic and was afraid to tell her husband out of fear of being stigmatized. But after educating her and eventually her husband, he was no longer scared to stay in that marriage, and he ended up being very supportive.

For that client I really related to her. If I had the correct information when I was diagnosed, I would have made different choices. I would have gone to the clinic more often to get the right information instead of staying away like I did.

Why are you attending the U.N. General Assembly and how are you advocating for community health workers?

I'm here representing mothers and community health workers because we need to be recognized as professionals and get paid for what we do. Most community health workers are women who have at least finished high school, and they do not [always] get paid for what they do. We get up every morning just like the doctors and nurses and go serve our communities, but we're [often] expected to do this for free, which is not right.

Mother2mothers does pay its workers and with that wage I'm able to take care of my [now 6-year-old] daughter as a single mom. I pay for her school and now am building my own home. I'm also saving up to further my studies. Next year I want to study social work and community development and get my degree.

What is life like for you now living with HIV and caring for your daughter?

Now for me it's such a joy! When I think back about my experience, I would cry like it was just all sadness. But what's different now is I look back and I see it as a learning experience. And it just makes me happy to be to be able to do what I'm doing and to also be healthy for my child. I think we are all happy.