A Lifelong Journey with HIV is Easier without the Extra Baggage: The PostTest Series

Last month, we observed National HIV Testing Day (NHTD), which raises awareness about HIV testing and encourages people to be tested. All around the country, local events and campaigns brought people together to strengthen support for HIV testing and to make it easier for people to get tested by bringing testing to places where you wouldn’t normally find it. For example, the Florida Department of Health in Miami-Dade County set up HIV testing sites in Metrorail stationsExit Disclaimer  so commuters could get fast and free tests. And the Eau Claire Public Health and Human Services Department and the AIDS Resource Center of Wisconsin collaborated to offer free HIV tests to patrons of a local bar.

Now that NHTD is behind us for this year, it’s an excellent time to reflect on what happens after testing. Getting tested is only the beginning—for people who test positive, it is (or should be) the entry point into HIV care and treatment. For those who test negative, it’s part of an ongoing process of staying that way.

So what happens after people get their test results? How does it affect their lives?Now that NHTD is behind us for this year, it’s an excellent time to reflect on what happens after testing. Getting tested is only the beginning—for people who test positive, it is (or should be) the entry point into HIV care and treatment. For those who test negative, it’s part of an ongoing process of staying that way.

That’s what I want to explore in a number of blog posts that we’ll be doing in the wake of NHTD. In this post, I’m going to share a little of my own story about testing positive and starting HIV medical care. Over the next month or two, I’ll continue to examine what happens after the test—for those are diagnosed with HIV and those who are HIV-negative. I’ll also look at how information about new HIV diagnoses is being used to help individuals living with HIV and to monitor the epidemic and the impact it continues to have across the U.S.

The Diagnosis

It’s hard to communicate to someone who hasn’t experienced it just how much getting a positive result on your HIV test alters the rest of your life. It can change how you see yourself and what you want your life to be like - both now and in the future. Being diagnosed with HIV can also profoundly affect (in both good and bad ways) relationships with other people. In the best-case scenario, it also starts a life-long relationship with HIV medical care, treatment, education, and supportive services.

Of course, every person with HIV is unique, and each one has a different story. My diagnosis was unusual in some ways. The date itself was momentous: World AIDS Day 1994. I also got my test results from my own doctor, whom I knew and trusted, and who had experience treating people living with HIV. As soon as I heard her voice on the phone, I knew I was HIV-positive; she had never called me at home before, and she sounded as if she had been crying. My first instinct was to comfort her! She asked me to come in the following day, so that we could talk some more and she could draw some blood for lab tests.

Being able to go in so quickly was a precious gift. It reduced my anxiety after getting the diagnosis because I had a plan for what I needed to do next, and I knew that I could get my questions answered.

At that time, it was unusual to start treatment for HIV before your immune system was severely damaged. But I had heard noted HIV researcher Dr. David HoExit Disclaimer talk about the potential benefits of starting treatment soon after diagnosis; thanks to his influence, I was an early believer in “hit early, hit hard.” It just made intuitive sense to me that reducing the amount of virus in my body was a good thing, so I told my doctor that I wanted to start treatment right away. As soon as my lab results were in, she started me on AZT, which I took every 6 hours, around the clock.

Of course, now we know that taking AZT by itself is not a very effective treatment and that early treatment with a single drug can lead to drug-resistant virus. I did become resistant to AZT, and my HIV disease progressed until my CD4 count hit a low of 201—which meant I was only one cell away from being diagnosed with AIDS. (Between 500–1,600 is considered a normal CD4 count.) The stress that created made me spend more time doing research and isolated me a little more from other people who were not engaged in a life-or-death struggle with HIV.

But I was lucky—that year, effective antiretroviral therapy became available, and my CD4 count quickly shot up to the 700s after I started taking one of the new “cocktails” that consisted of a combination of three different HIV medications.

A New Life with HIV

While it varies from person to person, the experience of going from HIV-negative to HIV-positive often involves taking on a new identity. When I was first diagnosed, I wanted to talk with other people who were also living with HIV to learn from them and get support. People with whom I could share my diagnosis without having to worry about their reactions. Those who could understand my experiences and listen to me talk about my fears without that “everything will be ok” reaction that people so often have when they are trying to be helpful. People who had managed to hold their lives together despite the horrors of what it meant to live with HIV at that time. They became my heroes, and the living and breathing symbols reminding me that I could somehow survive.

During my first few years of living with HIV, I spent 8-12 hours a week reading journal articles and newsletters from leading HIV organizations in search of something that would slow the virus and buy me enough time until a cure was found. It was a desperate search—one that I felt my life depended on. Searching for information about HIV care and treatment and tracking down the latest alternative therapies became almost a part-time job. I knew my doctor didn’t have time to keep up on everything that was happening in the scientific and alternative treatment communities, so I would go to my appointments with information about treatments in development or existing alternatives that weren’t yet on her radar.

But a diagnosis of HIV is about more than just a physical condition. The social stigma attached to HIV is unlike that of any other modern disease I can think of. I was fortunate, however. I never had any long-lasting sense of shame, failure, or fear of rejection after I was diagnosed. Sadly, my partner John had suffered more than enough of that for both of us. Watching John’s anguish and shame about having HIV caused me to take a very different approach to my diagnosis and to be public about my HIV status. I didn’t hide or lie about it because I refused to give that much power to the virus.

More important, I instantly realized my responsibility to make sure I didn’t transmit HIV to anyone else. I disclosed my status as soon as possible (e.g., the first time I met someone, or before a first date), so that any man who was interested in me could make his own informed choice. That approach started things off honestly and headed off any potential concerns about what I should have said, or when I should have said it.

Finally, I decided that I would not let my diagnosis change my plans. I put my fears aside and took a chance. I packed up and moved from California to Georgia to start a new career at the CDC. Several years later, after my health was stable, I went back to school to get my Ph.D.

Twenty Years On

It has been close to 23 years since my diagnosis. So many things have changed since then…

After taking care of John while he was dying, I knew that staying in HIV care and taking my medications every day would be absolutely necessary for my survival. I know that I’m still alive because I did. I also believe that adhering to treatment honors John’s memory and the memories of many others who are no longer here—memories I keep with me as a reminder of the love, the friendship, the hopes, and the dreams that we shared a long time ago.

Today, there are many different treatment options. My doctor knows much more than I do about current HIV treatment options, and I trust her to make the right recommendations. When a decision is needed, we talk about the pros and cons of the available options, and we choose what seems like the best one together. It’s her job to stay up to date on treatment options and mine to work with her to make the best choices for me.

I still think about being HIV-positive multiple times a day, but now it’s mostly in the context of remembering to take meds, get a prescription refill, schedule a medical appointment, or because of a work-related project or discussion. And, in the work that I do, having HIV has actually turned out to be an asset that allows me to understand the issues on a very personal level—as well as on a professional one. That is something I could not have predicted on December 1, 1994.

I recognize the privilege I have in being able to say those things, and I know that I have been incredibly fortunate. I’ve always had health insurance, access to good HIV care, and the ability to afford my medications, as well as the necessities of life.

But if you are struggling with those things, you don’t have to do it alone. There are sources of help available. You can use HIV.gov’s HIV Testing Sites & Care Services Locator—not only to find a testing site, but also to find the HIV medical care, treatment, and supportive services that can make it easier to manage life with HIV. The HIV/AIDS Bureau at the Human Resources and Services Administration (HRSA) supports a wide range of services for people living with HIV and can help connect you with other resources, like housing assistance provided by the Housing Opportunities for Persons with AIDS (HOPWA) ProgramExit Disclaimer at the U.S. Department of Housing and Urban Development.

Taking an HIV test can be the first step on a lifelong journey to wellness. I never wanted to have HIV, but like many people who have conquered a life-threatening illness, I have learned by facing reality head-on that I am more resilient and stronger than I believed I could be.

So if you’ve never been tested—or you’re at risk for HIV and haven’t been tested in the past year—please make it a priority and take a test before the summer is over.

If you know you should be tested, but keep on putting it off, don’t let doubts, fears, or shame stop you. There’s no shame in getting an HIV test. It’s a positive step in what is truly the journey of a lifetime toward taking control of your health, being healthy, and being happy. I can tell you that it’s much easier to make that journey when you leave the baggage of shame and fear behind you.

In the next blog that’s part of this PostTest series, I will tell you about a friend of mine who kept his HIV status secret for years until he got sick and couldn’t hide it any longer. Stay tuned…..