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Patient Perspectives: Surviving and Thriving With HIV

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Yvette Raphael

Executive Director, Advocates for the Prevention of HIV in Africa
Johannesburg, South Africa

Yvette Raphael has no relevant financial relationships to disclose.

View ClinicalThoughts from this Author

Released: June 21, 2022

Surviving and Thriving With HIV
I am a woman who has been living with HIV in South Africa for more than 20 years. My journey with HIV inspired me early on to become a human rights activist and led me to the cofounding and codirecting of Advocacy for Prevention of HIV and AIDS in South Africa.

Receiving My Diagnosis
I got tested for HIV in 2000, 1 year after I had my baby. I was feeling unwell and was losing a lot of weight. I told people that I felt very heavy, like my body was carrying a heavy load. People constantly asked me why I was losing so much weight, so I decided to get tested for HIV.

Back then, I thought that an HIV diagnosis was the scariest diagnosis to receive—scarier than cancer or any other illness. I thought I should start with the worst possibility, and if it were HIV, then I would know how to deal with it.

In South Africa at that time, an HIV diagnosis was very stigmatizing. Therefore, my first reaction was fear, especially for my 1-year-old baby. I did not want her to be an orphan. I had firsthand experience in my country with how devastating HIV can be. After the nurse told me—using medical jargon—that the HIV test result was positive, everything went black for a minute. It was scary. I felt dizzy.

When I reflect on this moment, I would have liked a different, more humane approach in how that news was broken to me, and I think that if I were a healthcare professional, I would have done it differently. I would have my patient sit down comfortably on a couch before disclosing their HIV diagnosis. At the time, an HIV diagnosis sounded like a death sentence, so if I were a nurse, I would have been much, much kinder to my patient.

My Care Journey
I was diagnosed during the time of HIV/AIDS denialism in South Africa, and antiretroviral (ARV) medications for HIV were not readily available. I was lucky, as I had just started a job, and I had medical aid—similar to Medicaid in the United States—so I could access medications, but I did not have a clear pathway to HIV care.

The nurse who gave me my diagnosis told me about a doctor down the hall who helped people get ARVs and said there was always a queue outside his waiting rooms. I went to see that doctor, and he is still my doctor today. I was actually one of the very first South Africans to start antiretroviral treatment (ART). I did not know anybody else on ART, and I became the guinea pig for my friends.

I have shown them that you can live long and be healthy on ART. My specialist is no longer the backdoor HIV doctor prescribing ARVs that the government did not want patients to have at that time. We did not even have guidelines at the time I started receiving ARVs.

Activism for a Rapid Start
I consider myself a human rights activist, an HIV advocate, and an HIV prevention advocate! I get through each day of my treatment journey because of my activism. When I was diagnosed, it was a difficult time for me, as my CD4+ cell count was 200 cells/μL, and I was always sick. Now, I fight for South Africans to start ARVs as soon as possible and not wait until their CD4+ cell count is low and their body is wasted.

A Positive Outlook
I also advise people to be positive about HIV, as their mindset can change how they look and feel. When I decided to be positive about my HIV diagnosis, my outlook on life changed. I think we all need to change how we look at things to stay motivated.

When I first meet with people who have tested positive for HIV, I am aware that the very first person they meet with HIV is going to make or break their ability to live with it, and that is why I am positive about everything, including the treatment.

To start treatment, a person must be mentally prepared to make a lifelong commitment to ART, and that can be overwhelming to think about. HIV stigma was strong when I was diagnosed, so I decided to commit to 5 years of ART, as I knew I could do that. Now it has been 22 years of ART!

Treatment Persistence and Family Support
What keeps me in treatment is family—my husband and my children. I take my ART because I know that I want to live. I wanted to attend the 2010 World Cup in South Africa. I wanted to be at my daughter’s graduation. I want to be with my son when his first baby is born. I have always set milestones for myself, and just knowing that I have something to look forward to helps me to go on.

My beautiful husband (who is HIV negative) is very supportive, and he puts our medication times on the calendar. He calls it “our medication” because it is beneficial for both of us when I take my ART. He makes me want to be as positive as I can be.  

I want HIV researchers to know that we are looking forward to the cure and to a vaccine. At the same time, I want people who have just been diagnosed with HIV to know that it is not the end of the world, and they can live a healthy and happy life with HIV. The diagnosis is life changing but not life limiting, so live life to the fullest and be somebody who helps others! 

Your Thoughts?
In your practice, how do you optimize persistence in HIV treatment? Join the discussion by posting a comment about your experiences.

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