For a long time, I never knew the fear of God. But on a chilly day in October, I felt it for the very first time.
A week before, I had gone to my primary care physician for a heart palpitation I was having every few weeks. It wasn't something I was all that worried about until I broke into what seemed like a panic attack in the middle of a dinner date.
I went to the doctor, got an EKG, underwent some preliminary tests, and as an afterthought requested an STD test. Why not?
When I got the call a week later my physician started the conversation by telling me she was about to email me my test results but that she didn't want me to "freak out."
"We need to do some follow-up tests," she said, her nerves peeking through in her voice.
"What portion of the test?" I asked, feeling my heart race harder than it had during any palpitation.
"The STD portion," she answered flatly.
My stomach dropped. Just the way she said it sent my mind off the rails. If it were something common or simple, she would have just told me. But it felt bigger, it felt scarier. And then I got the email that my results were in.
The fourth generation HIV test they used, I'd find out later, is the most modern of them all. The "reactive" result indicated that it was unable to eliminate the possibility of an HIV infection; it's designed to be extra sensitive in hopes that it catches infections within two weeks of exposure, as opposed to the generation 1 and 2 tests, which rarely return false positives.
I immediately called my doctor in a panic, and she pleaded with me to calm down.
"It's probably a false positive," she told me. "Don't freak out, just come down to the clinic so we can run some more tests."
Over the next few hours, I did what anyone else would do: I Googled the hell out of HIV and AIDS. I found out that 1.2 million people in America are currently living with HIV. That 1 in 8 of them don't know they have it. Had I been one of them?
When I got to the clinic I put my hood up, already feeling shame for a disease that still carries a stigma. On the train ride down I ran through all my sexual partners. One had tattoos. Can you get HIV from a tattoo parlor? I Googled that, too. Apparently it had never happened — not with piercings either.
But it didn't say it was impossible. I began to entertain the possibility that I was in the midst of a drug bender and so zonked out that I didn't even know who I was. I looked at myself in the reflection of my phone, wondering if I'd somehow lost control of an addiction I didn't even know I had. Had I been using heroin? Maybe I was infected by a dirty needle? Was I losing my mind?
HIV, I realized on the train ride to the clinic, was the disease I'd choose last in a lineup of life threatening illnesses: sexual and social exile, the potential for a battered immune system combined with the stigmas that still surround the disease. What could be worse?
My fears and worries were not quelled when I met with my primary care physician. She told me they wouldn't have results of the follow-up test until Monday, and it was only Friday. "Do you want some Xanax to help you sleep?" she asked, hearing the fear in my voice. "No, I want you to tell me I don't have fucking HIV," I told her in a soft tone, with a forced laugh.
She recommended I talk to the HIV and AIDS specialist down the hall, who could answer my questions more accurately since she had never seen mixed results like mine before. Which was not exactly comforting.
His answers weren't much better. He'd only seen the mixed reactive and non-reactive results twice in his entire career, but both times they were false positives. "It's really unlikely," he said with a look of pity. He then unleashed a battery of questions.
"Are you a homosexual?"
"Do you have a drug history?"
"Do you use intravenous drugs?"
"Have you had sex with any prostitutes?"
"Do you use a condom when you have sex?"
"Most of the time, yeah," I told him sheepishly.
He nodded: "It's extremely unlikely that this is the real thing," he said."The chance of you encountering HIV with a woman in your demographic is very unlikely. Unless you've been with any prostitutes or serious drug users, I sincerely doubt it."
Even if I had been with someone who carried the virus, the odds were still low. There's only a 1 in 2,500 chance of infection if you are exposed. Then again, 1 in 4 new HIV infections are among people ages 13-24 (I'm 24) — and 270,000 women living in the United States have HIV.
"We'll take another look at your tests and get back to you on Monday," he said.
Fuck. Monday I was flying to Iceland for music festival with my brother. Meanwhile, I was hosting a Halloween party in a few hours. I spent the weekend surrounded by friends lost in thought, trying to hide the fear on my face. How could 1.2 million people be so strong to live with this disease? I wondered.
After a weekend of little sleep and lots of desperate, fearful writing, I spent all Monday morning anxiously waiting for my phone to ring. When I hadn't heard anything by noon, I called the doctor. The test results still weren't in. The day ticked on. When five o'clock rolled around, with just a few hours before my flight to Iceland, I emailed my doctor to request that she let me know over email since I wouldn't have phone service in Iceland.
Sitting in the cab with my brother on the way to the airport, we talked about our plans for the trip and what bands we'd like to see. I pretended my mind wasn't elsewhere. Then my phone vibrated in my pocket. I picked up and felt my consciousness closing in around me, like I was walking up to the edge of a cliff and looking down, that dizzy kind of fear that paralyzes you and buckles your knees inward.
"The results came back all negative," she said right when I answered. I slapped my brother's chest and grabbed at his coat as he laughed, confused, and punched me back. "I'm good?" I asked, nearly shouting now above the NYC traffic. "All the tests were negative," she said again. "You're fine. We even re-ran the first test and everything came back clean. Have a good trip."
In the brief moments of astounding relief, I felt my thoughts and fears and doubts from the previous few days unravel like a ball of yarn and fall out all around me. And then my relief was bulldozed by sadness, sadness for the millions of people who have gotten that call and had it go the other way.
What I realized over the weekend, wondering if I’d been dealt a time limit on my existence, is that nothing is more precious than the ambitions we hold. Half of the people diagnosed with HIV still won’t live past their 43rd birthday, and nothing is more valuable than the freedom we feel with a clean bill of health and a road ahead of us. Nothing can beat feeling that you have time, and yet so many people don’t. So many people already face the daunting idea that their life may be limited, and for HIV patients all over the country and the world, we treat them like they are less than.
And then my relief was bulldozed by sadness, sadness for the millions of people who have gotten that call and had it go the other way.
We fear physical contact, assume they have been irresponsible or promiscuous, that they are addicts or somehow dirty. But the truth is HIV can happen to anyone. All it takes is one night of irresponsibility, one poor decision, one accident.
While HIV may not be the death sentence it once was, the damage it has already done is still stunning. 39 million people have died from AIDS since the beginning of the HIV epidemic. In 2014 alone, 1.2 million people died of the disease around the world. Despite declining mortality rates throughout the US, from 1984 to 2010, 25 to 44-year-olds were the only demographic group to experience a higher mortality rate than they had in previous generations. During the worst years in the 80s and 90s, AIDS killed 40,000 people a year, more than 30,000 of which were 25 to 44 year olds, according to Bloomberg. The same age group I would have been in had my diagnoses been positive.
Thankfully, progress is being made. As sexual education becomes more common, rates of infection have gone down. Treatment has improved enough that people infected with HIV now have a realistic chance to live into their 60s. Just last month, a major breakthrough helped show researchers where HIV remains most active during treatment, a major step down the pathway for a cure.
As we get closer to stopping the HIV epidemic, I hope my story can remind people of a simple fact: there are people behind the disease, people who want to live happily and healthily. The symptoms of AIDS (fever, chills, rash, muscle ache, fatigue, ulcers, weak immune system) are bad enough on their own. No one should make things worse by adding to the stigma. Instead, show love and compassion to those who have the disease. You never know, one day it could be you.