Having HIV Doesn’t Stop Me From Being Happy

Speeches Shim

Friday, December 20, 2019
Lyubov Vorontsova is the Project Coordinator at the Central Asian LEADER for PLHIV project, which is funded by USAID through the U.S. President’s Emergency Plan for AIDS Relief.

My name is Lyubov. I live in Almaty, Kazakhstan. I am 35 and HIV positive. 

I found out about my HIV status in 2004 when I was 19. It sounded like a death sentence, and I could not believe it was happening to me. Back then, I feared I would only live for a few more years and never have children. 

Initially, I was humbled by my diagnosis, but I just could not accept it. During that time, my family surprised me the most. They were so calm and supportive. It confused me because absolutely nothing had changed in our relationship, and they treated me the way they always did. I remember going through all stages of grief: denial, anger, bargaining, depression, and acceptance.

In 2010, I started working at the You Are Not Alone Foundation, a local civil society organization based in Pavlodar, Kazakhstan, and funded through USAID’s Central Asia Dialogue for HIV and TB project, which provided educational information about treatment, legal, and psychological support for people living with HIV. 

At first, I started attending support group meetings as a participant. By that time, I was already on antiretroviral therapy treatment and staying on these treatments helped prevent passing HIV to my baby when I was pregnant. 

Even after giving birth to a healthy baby, I still struggled with accepting my diagnosis. I was dealing with feelings of shame, and could not openly say that I had a chronic disease and will live with it for the rest of my life. Peer support groups played a major role in helping me accept my status and understand that now it is part of my life. 

Organizations like You Are Not Alone have an important role in ending the spread of HIV because they work closely with the communities with a high risk of transmission. They conduct HIV prevention activities so people can learn to stay safe, and provide support services for those who have HIV so they can learn to live a healthy life and not feel ashamed of the disease. 

Later, I started working with people with HIV and educating them. At first, at various conferences and meetings, I always spoke on behalf of the organization as a social worker and consultant and didn’t reveal my HIV status. However, I saw that my words didn’t really reach people. They did not know what questions they could ask, and we didn’t connect. 

I disclosed my status for the first time at a training for journalists, and it was a very emotional experience for me. There were some journalists in the audience I knew from my university days, and as students we used to participate in HIV-prevention activities together. The audience was very supportive, and some participants thanked me for opening up and talking about it. 

Today, I work at the Kazakhstan Union for People Living with HIV, which is part of the Central Asian Association of People Living with HIV (CAPLA). The CAPLA receives support from U.S. President's Emergency Plan for AIDS Relief through USAID to combat stigma and discrimination, promote human rights, and support access to health services for people living with HIV. CAPLA has worked with the Ministry of Health here in Kazakhstan to develop an anti-stigma and discrimination policy that has become part of the National HIV/AIDS Strategy.

It is important for people living with HIV to accept their status so that they are not ashamed and too scared to seek support because stigma and especially self-stigma create significant barriers and hinder the delivery of medical, social, and legal services to affected people. CAPLA also trains health care providers to be more approachable and welcoming to people at high-risk of HIV, so they will be more likely to seek HIV testing and if necessary, HIV treatment.

I believe that a real-life story can elicit compassion and empathy in people. I started a personal blog, where I’ve shared my experience with disclosing my status. I write about reproductive health, HIV-prevention methods, antiretroviral therapy, and “discordant couples” — a term that refers to when one partner is HIV-infected and the other is not.

People can lead healthy, happy lives with an HIV-positive status. I have a 12-year-old daughter. My partner is HIV negative. He accepts my status and we follow the prevention advice from my doctor to keep him safe from HIV. We’ve lived as a discordant couple for the past four years. I have graduated from college, traveled extensively, and I love my job. I would like people to accept me not through the prism of my HIV-positive status, but by taking an interest in my achievements and hobbies.

Lyubov’s advice for people living with HIV: Keep in touch with your physician, and ask questions to learn more about HIV. Continue to live as you lived before because an HIV infection shouldn’t limit you. Just be more attentive to your health and your partner’s health. Find a peer counselor because support during such times is crucial. Read more about HIV treatment and familiarize yourself with the laws protecting people with HIV and other chronic diseases. 

Many people with HIV believe that they no longer have rights, like the right to health care, the right to work, or the right to education. 

HIV is not a barrier to being in a relationship. You do not have to confine your search for a partner within the HIV-positive community. As long as you follow your treatment, you can keep your partner safe, have healthy children, and live a long and happy life.