“Here’s How I Knew I Had HIV”: One Patient’s Story After a Single Intimate Encounter

About 1.2 million people in the US currently have HIV, which stands for human immunodeficiency virus and is the precursor to developing AIDS. Many of us might remember HIV and AIDS as illnesses that decades ago caused more questions than answers.

Thanks to cultural awareness and rigorous research that have brought science and medicine a long way, today there are patients who are able to manage these conditions in part with the antiretroviral treatments that are available now. “The newest drugs have far fewer side effects than the older medications and are very effective at reducing the virus to undetectable levels, and undetectable equals untransmittable,” says Jon McGarry, MD. Dr. McGarry is a medical doctor specializing in the treatment of HIV/AIDS and the chief medical officer at MISTR, a telehealth company that provides pre-exposure prophylaxis (or PrEP), a medication that’s taken to prevent getting HIV. (Note: PrEP is 99% effective at preventing the transmission of HIV when taken properly; however it does not treat HIV infections.)

Possible HIV symptoms

A downside to all this progress is that of the million-plus people in America with HIV, it’s estimated that 13% aren’t aware that they have it. “HIV can present as a sore throat or flu-like illness, but many people have no symptoms at all and are unaware they are infected,” Dr. McGarry says, adding that the infection can lay dormant for years before symptoms present. During that time, the virus can be spread to other people. “Some people don’t know they have HIV until the more advanced stages when they get unusual infections, rashes, or other illnesses that they seek medical care for,” he says.

Because individuals can go so long without symptoms, there are cases when it’s routine lab work ordered by their doctor or health clinic that finally reveals the presence of infection. “That is why it’s important for people at risk, or who engage in high-risk activities like unprotected sex with multiple partners or IV drug use, to get routinely screened for HIV and other STDs,” Dr. McGarry says.

Generously sharing his powerful story is Ted A., a retired priest who contracted AIDS from a single sexual encounter. Ahead, Ted shares his story about living through the beginning of the AIDS epidemic, contracting the disease himself, getting diagnosed and how it affects his life today.

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By Ted A. as told to Charlotte Hilton Andersen

Dressed in a Hazmat suit, I peered down at the young man. Pale and barely conscious, he was dying, and I was there as his priest—but due to the thickness of the gloves I had on, I couldn’t even hold his hand. It was the early 1990s, in the height of the AIDS crisis. My protective equipment had been a recommendation from his healthcare team. Through the glove, I touched his arm, wanting him to know that he wouldn’t die alone.

This young man passed the following day. I was heartbroken to be one of just three people in attendance at his funeral, along with the church organist and funeral director. As a closeted gay man, I felt deep personal pain, too.

Coming out in my fifties

For decades I worked as a clergyman, hiding my sexuality until I retired early in 2009. I was 51 years old, coming out as gay. I finally began to live the part of my life I’d suppressed for so long. It felt great, and I found happiness I’d never had before.

But entering the dating scene in the digital age, in middle age, and after decades of serving as a priest—it was tough. So after a couple years, when a man approached me about “playing” together, I decided, Hey, maybe it’s time to live a little and take a risk. We had sex—just a one-time hook-up—and then he left. I never saw him again, and I wouldn’t think about him again until one fateful day a few years later.

Too exhausted to walk

It was 2015. I was 57 years old, and I had been seeing a doctor regularly for my severe back pain—but suddenly, I began to lose weight. It was unexpected as I wasn’t trying to diet, and within a month, I was down 32 pounds. I was worried, but my doctor congratulated me and told me to keep up whatever I was doing because it was good for my heart. “You look great!” he said.

I may have looked slimmer, but I certainly didn’t feel great. I continued to lose weight and developed a strange pimply rash on my behind. But the worst part was the weakness and undeniable exhaustion. At first, I just had trouble getting out of bed. Then, I had trouble walking. Then, two months after my doctor had told me I was doing great, I was so exhausted I felt like I might die. I laid on the floor and called 911.

At the hospital, they ran lots of tests, but I would find out later that none of them were HIV tests. I ended up going to multiple physicians, including a cancer doctor, but no one could figure out what was wrong with me. As my primary doctor would later put it, “You just didn’t look gay enough, Ted!”

This is one reason it’s so important that we don’t stereotype people or medical conditions. I guess what he meant is that I’m older, clean-cut, I dress conservatively and don’t display particular mannerisms. No one thought to run an HIV test because I didn’t fit the mold of what they thought a gay man looked like. That could have ended my life.

After weeks of agony, I was finally sent to the renowned medical school at Rutgers University. I was so exhausted I couldn’t drive myself there and had to pay a neighbor to take me. Thankfully, the answer came fast.

Living my nightmare

The next day, my primary care doctor called me and said, matter-of-factly, “Ted, you’ve got AIDS.” It wasn’t HIV, he said, adding that my lab work showed “really” concerning results.

All this was on the phone, while I was alone. I had AIDS.

The doctor continued: My tests showed a viral load of over 400,000 copies per milliliter (copies/mL). Anything over 100,000 copies/mL is considered to be AIDS. I had a CD4 (a test that measures immunity blood cell values). Anything below 200 cells per microliter indicates AIDS. Mine came in at 69.

I was stunned and began weeping. All I could think about was that young man I’d laid to rest and the dozens of other AIDS patients I’d cared for. My whole world collapsed, and there wasn’t a soul I could call except my estranged sister, who happens to be a doctor but sadly can’t bring herself to say the word “gay” out loud.

“I’m going to die,” I whispered to myself, over and over.

“No you’re not,” said the internal medicine doctor I was referred to a week after receiving the news—a week that had been filled with terror, ill-advised Google searches, and terse conversations with my sister. “Ted,” the doctor said, “we’ve got dozens of medications for HIV. Take one pill every day, and you’re going to live a regular life span.”

Really?

“Honestly,” he said, adding that he was more concerned about the possibility of me dying of a heart attack, given my blood pressure. “You should really get that in check,” he advised, which made me feel better. I wanted to remind him that anyone’s blood pressure would be high after getting my diagnosis. He set me up with a treatment plan, which was reassuring.

My HIV treatment

I was started immediately on Atripla, a drug used to inhibit HIV. It would cost about $3,000 per month, but I was fortunate that my health insurance covered most of it. The goal of treatment would be to lower my viral load to an “undetectable level” (40 to 75 copies/mL) and raise my CD4. Within six weeks on the medication, my levels were undetectable—and, as the medical community says, undetectable equals untransmittable.

It seemed miraculous. I went from being convinced my life was ending to feeling like my old self again.

I stayed on the Atripla for three years until I tripped and fell in my yard, shattering my shoulder and wrist. It turns out that Atripla has a side effect of causing bone loss. My doctors switched me to Bitkarvy, a different HIV medication that doesn’t have that side effect, along with Boniva to help rebuild my bone density.

What living with HIV is like for me

From the outside, living with HIV seems to be no big deal. I get checkups every six months, and as long as I take my pill every day, then all is fine.

Still, HIV has completely changed the way I live, mostly because I’m too afraid to tell anyone I have it. There is still a huge stigma about HIV and AIDS—even within the gay community of people my age.

So, you can manage HIV very effectively these days, but it doesn’t come without downsides. The drugs have side effects. Friends and family treat you differently. When people go to hug me, I freeze up. Would they still want to hug me if they knew? Logically I know that I can’t give them HIV through a hug, but when people aren’t familiar with the realities of the illness, it’s natural for them to feel uncertain. You always have to be thinking about it and planning ahead.

A friend recently invited me on a month-long international trip, and my first thought wasn’t about how fun it would be—but instead how I was going to get my medication, transport it through customs, and hide it from him even though we’d be sharing a room for an entire month.

It also affects a patient’s medical care because treating HIV has to come before treating other conditions. Not taking the medication can cause the condition to go from chronic and manageable to fatal.

Even so, I embrace the chance to live an active life and am thankful for the medications we have today. My story might serve as a reminder of how important it is that we foster a society without shame, while also encouraging safe sex. After years of hiding who I really was, all I wanted was to experience life fully. I learned how one moment can have permanent effects.

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• Magic Johnson Exclusive: ‘I Needed to Become the Face’ of HIV
• 13 Surprising Things Most People Don’t Know About HIV and AIDS
• 14 Facts About STDs That Could Save Your Life
• 10 Questions Every Gay or Bisexual Man Should Ask Their Doctor