How It Feels to Be Diagnosed with HIV, According to People Who Live with It

“When I first found out I was diagnosed with HIV, I went into shock. I figured I’d be dead on Monday.”

Loading the player...

Being diagnosed with HIV can be scary, but not knowing your status can put you and others in danger. When you treat HIV early and consistently, your chances of developing AIDS drops drastically. That is why it’s important to get routine HIV tests when you are sexually active.

What’s it like to actually receive that news? Here’s what getting diagnosed with HIV has felt like, from its early days in the '80s, all the way through 2019, from five people—gay and straight, male, female, and trans—living positive lives.

Feelings That Come Up After Being Diagnosed With HIV

Fearing the “Walking Dead” and Isolation

“At that time, people were literally dying. Of course, I wasn’t aware of ‘the walking dead’—I never witnessed anyone being alive one day and dead the next, but I had heard things like this.

“I do remember thinking at the time, ‘Oh my gosh, I’ll won’t be able to have sex again.’ I internalized it, [thinking] ‘Oh well I’m dirty, nobody will want me,” this sort of thing. So I had to unlearn a whole lot of stuff. But the point is, it’s a process.”

—Reginald Brown, diagnosed with HIV in 1986

Losing the Will to Live

“They mentioned it on the news that it was a gay disease—a gay cancer. The only place that was doing HIV testing was the Department of Health. I was number 23, and then they took my blood. They told me to come back in two weeks for the results. The nurse said, ‘Number 23, you’re HIV positive.’

“When I first found out I was diagnosed with HIV, I went into shock. I figured I’d be dead on Monday, actually. So when she asked me if I was going to kill myself, I looked at her and I said, ‘No, I have no reason to kill myself.’ But, I [did lose] the will to live. ”

—Jarvis Hall, diagnosed with HIV in 1984-85

Shock—Even After Being Prepared

“I grew up in the Baptist church. At the time, we didn’t know what trans was; we had never heard the word. I proceeded to take two tests a year from the time I was 14, all the way up until the time when I was 26 and tested positive. Even though I knew [I would], I was still devastated. Like, getting the news [from a partner] never prepares you. Even if you already know, it’s still a shocker.”

—Kineen Mafa, diagnosed with HIV in 2003

Anger, Denial, and Loneliness

“At that time at 19, I felt like part of me—the young lady that I knew—she died. There’s different stages after contracting HIV. You go through the angry phase, denial phase, the isolatory phase. I was angry for a point in time, suicidal (two failed attempts), I isolated myself from my friends, my family, from the world, pretty much. Until four years ago, when I started my own healing journey.”

—Thamicha Isaac, diagnosed with HIV in 2003

Learning That Thankfully, It’s Not a Big Deal Anymore

“I was doing a show in Delaware and my stomach was hurting. So I went to the doctor and we did some blood work because we just couldn’t figure out if it was an upset stomach. So the doctor came in and he let me know that I was positive. He also let me know that it wasn’t a death sentence like it used to be, that there’s medication available. They would help me—I had insurance. It wasn’t a big, big, big deal. And I’m thankful that the doctor didn’t make it a big deal. We just said what it was, figured out the next steps, and here we are.”

—David LaMarr, diagnosed with HIV in 2019

How Treatment Has Changed the Prognosis

These days, with the medical advancements of PrEP, combination antiretroviral therapy, and even monthly shot treatments, managing HIV is much like any other chronic illness. Millions of people are not only surviving, but thriving since their diagnoses. Despite this, people with HIV still face some stigma in their communities.

“Here I am, this Black, queer person, living with HIV all this time,” remarked Reginald. “And you know what is still a killer? Stigma.”

The stigma that still persists with HIV has many consequences. First, it keeps people from wanting to get tested and from disclosing their status with their partners to avoid rejection. It also prevents people from starting or adhering to life-saving treatment out of fear of what other people will think.

Learn more about the reasons to remain hopeful after you (or a loved one) receive an HIV diagnosis.