What to Do After You’ve Been Tested for HIV

The window is long, but it’s open. Here’s how I coped and took control of my health

Photo: Jonathan Knowles/Getty Images

I’m not an HIV expert, but I do know what it feels like to wait to find out whether you’re positive.

The window period is the time it takes for the body to produce HIV antibodies that can be detected by an HIV antibody test — and it can last from three weeks to as many as 12 weeks. During my lifetime, I’ve had to wait in that window a few times. There were even times I was in the window and didn’t know.

The first time I found myself there was in 2004. When we finished having sex, I asked my partner if he was HIV-positive, and he said, “Yes.” He told me there was nothing to worry about, that he was healthy. My friends told me there was no cause for alarm. If I got sick in a week — or if my lymph nodes started to swell — then I should be concerned.

I worried anyway. I worried as I waited in the window. And after I got out of it, I swore I’d never return.

I downplayed, I second-guessed, I blew things out of proportion. All those questions made me put off treatment and delay getting tested.

But in 2014, I found myself in the window again, and it was harder for me to wait this time. I was living in Argentina and didn’t understand the language very well and knew little about the health care system there.

Waiting in the window period can be stressful. I have some suggestions that helped me personally that may help someone else looking for hope while waiting to test for HIV. But first, I’ll share what didn’t help me:

Questioning my risk level didn’t help

I knew I was at risk, but I wanted to know the odds. I wasted time replaying the scenes of the encounter to comfort myself. None of it was good. Rewinding the encounter in my mind made me feel guilty — and worse, it confused my thinking. I downplayed, I second-guessed, I blew things out of proportion. All those questions made me put off treatment and delay getting tested. And my questions kept me fearful.

Searching the internet didn’t help

I Googled every possible variation of my query and scrolled through health forums online, looking for answers. I saw answers that seemed to fit my scenario, but I also came across ones that didn’t make me feel better. And, of course, I found stories about contracting HIV from low-risk behavior.

Opinions were varied. Some health professionals seemed to err on the side of caution while others didn’t. There were times when I wondered whether government sites were more conservative than necessary and overstated my risk. Sometimes I would read the same answers that downplayed my risk over and over again. I clung to every word that made me feel better — but some of those online answers may have been a false hope.

Asking my friends didn’t help me

It’s natural for me to tell my friends about what’s going on in my life. They listen and sympathize. Sometimes they downplay, and sometimes they have sound advice. But none of my friends could tell me exactly what I wanted to know: Had I contracted HIV?

The problem, really, was that all I could do was wait. And not everyone is comfortable waiting. What helped was to do something real — to prepare myself for the possibility of a positive diagnosis.

1. I asked for PEP

There are two windows for HIV. One window spans the time post-exposure prophylaxis (PEP) must be taken to be effective. And the second window covers the time to know the status.

If there’s been exposure to HIV within 72 hours, PEP should be sought right away. Go to the hospital. Go to a clinic. Search out free resources. Don’t doubt, don’t be afraid, and don’t delay. Just do it — no matter what the hassle.

When I was in the window, I would think about the hassle to get PEP. I’d talk myself out of the smaller PEP window. I wouldn’t seek out PEP, and I’d think my exposure wasn’t as severe as it may have been. It was easier to do nothing and hope for the best, but in reality, not seeking PEP only made me worry more. Maybe I didn’t go because I was lazy, embarrassed, or emotionally exhausted.

When I was abroad and thought I was at risk for HIV, a friend convinced me to go to the hospital and ask about PEP. I’m glad he did. I wrote down a translation and used Google Translate to ask the health care professionals about PEP. It isn’t 100% effective, but it can significantly reduce the chances of contracting HIV. PEP can also give some peace of mind about making the best effort.

The PEP window needs to be the first window we address. If possible, that window shouldn’t close without taking some action.

2. I changed my risky behavior

When I was exposed to HIV, I had to take stock of my risky behavior. I uninstalled some hookup apps on my phone. I resolved to avoid certain places and substances. The immediate change to my behavior helped me focus on the future and mitigate risk to others and myself.

3. I set a test date

Since I had been in the HIV window before, I knew how long it would be before I could reliably test. At times, I made a mental note of the test date. But I found setting the date on my phone or something else that could remind me was more helpful than a mental note. The phone reminder helped me not to forget the date and ensure nothing conflicted with the appointment.

In my phone calendar, I also made sure to put all the details for the testing location. Establishing a test date helped me to know when I could walk away from the window. It helped me to remember and to remove every obstacle to getting tested.

4. I wrote affirmations

By affirmations, I mean statements that are personal and true. These statements should balance our thoughts and center us in truth. Affirmations are personal, and they may not be for everyone. But for me, they helped me list out and see what’s true in my scenario.

Here are some of the affirmations I wrote while I was in the window:

  • It doesn’t matter what anyone else thinks or says about me.
  • I can still live a long and healthy life if I test positive.
  • God loves me, and so do others.
  • I don’t have to fear being unloved and lonely.
  • There are worse life sentences than HIV.
  • I am blessed to know my status.
  • Health care today is better than ever before.
  • Life insurance and health care will work themselves out.
  • God is still in control.
  • Eternity is what counts.
  • Everyone and everything dies.
  • My time in Argentina was purposeful and not a mistake.
  • My status has nothing to do with being gay.

Those were my affirmations. I tried to write one for every negative thought, untruth, or doubt I had about HIV. If you like the idea of affirmations but don’t want to write your own, you may want to consider quotes. Relevant ones could be about fear, health, courage, gratitude, optimism, or any other subject of interest.

5. I read and recited affirmations daily

It wasn’t enough for me to write the affirmations. I decided to read and recite them at least once a day while I was in the window. Eventually, I could recall a few of the affirmations from memory. On some days, when I felt doubt creep in, I read an affirmation or I’d say one from memory.

I read and recited my affirmations, all the way up until my test date. Since I tested alone without any friends or family, I was happy to have my affirmations.

6. I read and watched day-one testimonies and stories

I sought out blogs and videos of people giving their initial reactions to their diagnoses. Those words and videos gave me life and hope. Some people gave advice as they shared. Some were optimistic; some were raw emotion. I took it all in. The testimonies gave me some semblance of solidarity, humanizing HIV in a new and helpful way.

7. I got educated

Instead of scouring the forums and peppering Google with questions about my risk, I found it more helpful to educate myself about HIV. I learned about treatment options, providers, doctors, cost, and other aspects of the virus. There may be programs and organizations nearby that can provide educational information about HIV to the public, but it’s also something you can undertake yourself by sticking to reputable sources.

8. I planned for day one

For me, my self-education helped me to form a day-one plan of action if I tested positive. I heard about this idea while reading and watching diagnosis testimonies.

This type of plan is personal and may vary; it doesn’t have to be super detailed. I just needed a couple of action steps for day one. My plan included what I would do immediately afterward and whom I would contact. It helped me visualize and prepare for an undesired outcome. With my plan, I tried to be objective, practical, and kind to myself.

But the reality is that plans can get shredded. And there may not be any adequate action to address how someone feels. I recommend doing what feels right. And doing what’s healthy.

9. I planned for an HIV-negative result

Plans typically focus on the worst-case scenario. But someone may want to think about what to do in case of an HIV-negative result. Just the process of testing can create anxiety highs and lows. For me, I made a small plan of what I’d do if I tested negative.

Here’s what my HIV-negative plan looked like:

  • Donate to HIV causes
  • Volunteer for HIV causes
  • Seek PrEP
  • Create Google Alerts about HIV and AIDS
  • Watch two documentaries about HIV and AIDS
  • Read two books about HIV and AIDS

10. I talked to someone

Some people may benefit from talking to someone. Maybe it’s a friend. Perhaps it’s someone who’s been in a similar situation or a health professional. For some people, a one-time conversation may be enough while others may want regular communication. But in my case, talking to someone while I was in the window made it easier for me to identify someone I could go to and trust if I tested positive.

11. I went on with life

Living is a state of mind. It’s doing what is normal and making good decisions. It’s intentionally not focusing on the things that can’t be controlled.

For some of us, waiting to find out our status can be an emotional challenge. I hope we all have an opportunity to see some light while putting our health first; the window doesn’t have to be dark.

Get the Medium app