fbpx Making Life Good With HIV
A black and white photo of a man casts a turquoise and pink image of himself on either side.
A black and white photo of a man casts a turquoise and pink image of himself on either side.

Making Life Good With HIV

Living and loving with HIV: One woman's story of overcoming challenges and stigma.
Aleck Woogmaster
Written by

Aleck Woogmaster

Human immunodeficiency virus (HIV) holds a unique place in our public consciousness. There have been only a few illnesses that have broken through the shield of public awareness like HIV, primarily because of the death toll.

The problem concerning the virus in recent years is more nuanced. The advances made over the past several decades have given people living with HIV an undesirable quality of anonymity when it comes to public health education.

General knowledge about HIV is so underwhelming today that many people impacted directly by the condition face gaps in their own awareness.

One group particularly overlooked is women living with HIV.

Jennifer Brier, Ph.D., is a historian and professor of history at the University of Illinois Chicago. Having interviewed dozens of women living with HIV, she often encounters women who doubt some of the incontestable truths of HIV and sexual health in general. She has spoken to women who have a hard time believing the fact that U=U and, as a result, hold themselves to extremely high standards surrounding topics such as disclosure and dating.

U=U, or undetectable equals untransmittable, was originally the catchphrase of a campaign launched in 2016 by Prevention Access to help fight HIV stigma and better enable people at high risk of HIV transmission to get the prevention treatments they needed.

"They don't believe that they can have intimate relationships with people," Brier said. "Because they're so terrified of the surveillance and the criminalization, they can't imagine, they can't believe, they can't accept the possibility that they're actually not going to be able to transmit the virus because they're undetectable."

When it comes down to it, people diagnosed with HIV don't face many more hurdles to living and dating than anyone else. Stigma still exists, but there are sources of inspiration providing an example of how to take the diagnosis and live your best life.

Destiny and a delivery

Destiny Smith is a 27-year-old woman in Davenport, Iowa, who posts regularly online as an HIV-positive advocate and public speaker. She received her diagnosis five years ago under some challenging circumstances.

"I was 22 and pregnant when I found out [I was HIV positive] in 2017," she explained. "I found out the day after Christmas. I went through the five stages of grief and fell into a really, really bad depression afterward. I was already a single mom and I couldn't take care of my son. And that's kind of what made me get out of that depression."

Smith went public with her status a year later in June 2018 with a Facebook post.

"People were talking about my status, people I didn't even tell," she said. "And they were saying that I had AIDS instead of HIV."

The conflation of HIV and AIDS is one example of the unfortunate misunderstandings that surround HIV diagnosis, and Smith chose to confront the issue head-on.

"It just felt like a huge weight was lifted off my shoulders," she said. "I mean, before I made the [Facebook] status, I talked to my best friend and I talked to my mom. And I talked to my boyfriend at the time just because what I'm doing affects them. And I prayed about it. They all said it was fine. It was something that I needed to do."

A pregnant mother, of course, is going to have her child in mind as a chief concern when dealing with a new diagnosis like HIV. Fortunately for Smith and her newborn daughter, the birth of the child and the HIV diagnosis held separate spaces in regard to her daughter's health.

"I had my daughter on my birthday actually," Smith said. "She was HIV negative."

Smith was undetectable at the time of the birth, but said she didn't know what to expect regarding her daughter's status. Doctors told her a C-section would reduce the risk, so she took that route, and in the end, her daughter was born successfully but with HIV-related complications.

Parked cars and patient testing

A home pregnancy test had first revealed the burgeoning life inside of her, but when Smith saw a doctor for bloodwork and additional early pregnancy steps, it was discovered she was also HIV positive. She described feeling numb when the diagnosis was given to her.

"My mind shut off," she said. "I didn't believe what they were telling me. I asked to see the results."

Fast-forward five years and Smith was blogging for the Well Project and A Girl Like Me. She went from thinking she was going to die and lose her child to publishing her own book, "Living My Truth," in May 2020.

She said those online spaces were vital for connecting with other HIV-positive people and feeling a sense of connection and community.

At 4 and 7 years old, respectively, Smith's daughter and son don't necessarily know the specifics of their mother's condition, but her daughter can explain that she's HIV negative and both kids are aware she has to take medicine every day. Given that many adults are still in the dark about HIV and AIDS, it's no surprise her young children aren't exactly scholars on the subject yet.

Smith said she received her diagnosis when a medical caseworker came to the location of her job at Walgreens. Smith then returned to work and finished her day. After work, her car ran out of gas, so she called her best friend for a ride.

"I didn't plan to tell anybody anything that day because I had just found out, but I had to call her to come to get me and we were just sitting there having a conversation," Smith recalled. "She was laughing; I don't even remember what we were talking about. But as she was laughing, I was zoning out and I just said it. I just told her I had HIV. And she was still laughing because she thought I was playing and I was like, 'No.' Everyone knew I was waiting for tests but nobody thought it was going to be HIV. But once she realized I was serious, she hugged me and she rubbed on me and she let me know I wasn't going to be going through it alone."

As a peer navigator for a nonprofit organization, Smith now helps people process and cope with their own HIV diagnoses, as well as other life issues. In her personal life, she has dated and maintained long-term relationships since her diagnosis, but now identifies as single by choice.

"People think that because we live with HIV, we have to settle or people just don't want us and things like that," she said.

In reality, dating for HIV-positive people is filled with the potential to be dismal or delightful just like it is for anyone else. Everybody on Earth has to negotiate and navigate ignorance and biases as they arise in relationships in some form or another, but newly diagnosed HIV-positive people may be encouraged to know that their diagnosis doesn't have to delete dating from the landscape of their future.

"A lot of people don't care," Smith said. "A lot of guys don't care. A lot of people are educated. I know there's a lot of people who aren't, but there's a lot of people who are and they don't mind dating HIV-positive people."

Dating is one aspect of living a "normal" life, and regardless of a person's status, every normal life entails choosing whether to date or not. People like Smith are an inspiration because they remind us of the innate humanity in every person's life regardless of sexual health status or history.