Share your Story

HIV and AIDS affect everyone--and getting the facts can change your life. When you learn about HIV, you might change your sexual behavior, the way you talk to your partner or children about sex, or how you choose to protect yourself. We are all affected by HIV and AIDS, and we must all be part of the solution. Check back soon for ways to share your story and become a part of the Act Against AIDS community!

• Rich’s story
• Stigma is very real
• Michael’s story
• The Conversation
• Brother W.
• My first HIV test
• I am a Fan of the Condom
• Elizabeth’s Story
• Everyone is affected by HIV

Rich’s story

December 1st of every year, which is World AIDS Day, I recognize a personal anniversary. You see, on World AIDS day 1994 I was diagnosed with HIV. 

I was 30 years old at the time, living in California, and a widower.  Just 4 months before that, my partner John had lost his fight with AIDS.  He had progressed quickly—it was only about 2 years from the time he found out he had HIV until the time he died.  The last time John went into the hospital, he had an infection that the doctors had a hard time diagnosing and treating. After a few days he decided that he was tired and wanted to die.  So we arranged for hospice, set up a hospital bed in the living room, because it was the biggest room in our place, and he came home, and died a few weeks later with me and his family in the room.

About a month and a half after he passed, I got a call from a colleague at the CDC who offered me an opportunity to start a new life in Atlanta.  I had never lived outside of Southern California, but I was ready to move on and start a new life.  So I started packing things up and getting ready to make the move right after Christmas.  I figured it would probably take a while for me to find a doctor in Atlanta, so I decided to have a physical before I left.  It had been a little over a year since my last HIV test, so I decided to go ahead and get tested again.

When the phone rang that December 1st and I heard my doctor’s voice I was in shock and didn’t know what to do.  Now, I’m a worrier by nature, and I started worrying about what might happen right away. 

What would happen to me in Atlanta if I got sick? 

Who would take care of me? 

The sense of excitement that I had about moving across the country to begin a new life quickly changed to fear about what the future would hold and how long that future might be.

When my lab results came back, I found out that my CD4 or T cell count was 450, and I started taking AZT.  With some hesitation, I decided to make the move to Atlanta and start my new HIV-positive life there. 

That first year, I met my husband Rob who I am still with and very much in love with to this day. 

And although I was incredibly happy with my life, I watched my CD4 count steadily decline.  I took all the medications that were available at that time, AZT, DDC, DDI, D4T, but my CD4 count kept going lower and lower.  And by the fall of 1995, I had a CD4 count of 201---just two CD4 cells away from being diagnosed with AIDS---and I was certain that I would only have one or two more years to live.

All of that changed when a friend of mine with AIDS gave me some of the medication he had received through an expanded access program.  That medicine was Epivir or 3TC.  Even though it wasn’t working for my friend, when I started taking it, my CD4 count shot up over 700 in just a few weeks.  The next year, the first protease inhibitors became available and I now have a CD4 count that ranges between 900 and 1000 and have had an undetectable viral load for more than a decade.

I choose to share my story because I wanted to remind you how important it is to keep fighting.  Even when things look their darkest, you have to keep on fighting.  You never know what the next day might hold.  You have to hold on to that hope, because the only thing constant about life is change, and the next breakthrough or the next person who could change your life could be just around the corner.

I also wanted to tell you of how important we all are to each other and how much people living with HIV need your love and support.  I wouldn’t have moved to Atlanta if it hadn’t been for the support I had back in California, and I wouldn’t be here today if it wasn’t for the help that my friend gave me in a time of need.

Most importantly though, I wanted to remind you of the impact that HIV has had, and continues to have today, on our lives here in this country.  Even though it has been almost 30 years since the first cases of AIDS were recognized in this country, and even though we know prevention works, every 9 ½ minutes someone in this country becomes infected with HIV.  That translates into more than 56,000 new HIV infections a year in the United States.

I remember the early days of the epidemic, and I worry that the lessons of the past are being lost on those who just want to forget them or are too young to have lived through those dark days.  HIV and AIDS are not over!  They are not just a problem for the rest of the world!  When you have HIV, it’s not just something that you can just forget.  It changes your life and your relationships forever. 

All of us who are living with HIV have a special responsibility to make sure that the spread of this virus stops here and now.  It’s a lot easier to prevent getting HIV in the first place than to deal with a lifetime of medications, doctors’ visits, and medical bills.  We not only have to stop HIV from being transmitted in our intimate relationships, but we also have to be living reminders that this country is still dealing with a deadly epidemic.  We need to be role models and speak out, be seen, and be heard.  We need to remind those who are naïve, uninformed, uncaring, or would just rather ignore the fact that HIV and AIDS are still a major problem right here in our own country.  How many more 9 ½ minutes have to go by before you act against AIDS?

Rich, age 44

Stigma is very real

When my husband and I were young, we met an extraordinary man.  He was a senior executive at my husband’s company and he offered my husband a promotion and an opportunity to relocate to San Francisco.  We probably never would have even considered moving so far from Atlanta, our home, but somehow we innately knew that Ron was going to be instrumental in teaching my husband about business and both of us about life.  About six months after moving, Ron asked us to dinner, saying that he had something important about which he wanted to talk.  He proceeded to very cautiously and carefully to explain to us, this young couple born and raised in the Bible belt, that he was gay.  We ended up, all of us, laughing so hard that we were crying as we explained that we had known for months.  After all, for our first few months in the City, he was the only friend we had.  He had referred us to a gay doctor, and a gay dentist, a gay dry cleaner and a gay accountant.  I spent more time running errands in the Castro than people who lived there.  Of course, we knew.  But, that this exceptional man was cautious about coming out to us says a lot about how strong the fear of stigma and fear of rejection can be.

After that night, we got more and more involved in each other’s lives, as good friends do.  We supported Ron as he dealt with the illness and subsequent death of an ex partner.  Much later, with a great deal of sadness and more than a little bit of shame, he broke the news to us that he, too, had been infected with HIV.  Maybe he wasn’t always as careful as he should have been.  Maybe his partner wasn’t always honest.  We didn’t know, nor did we care about the “whys” behind his infection.  That Ron was once again concerned about our reactions made both of us more determined than ever to support him and do it with absolutely no judgments.  We decided then and there to actively NOT allow the stigma associated with AIDS to affect our friendship.

As the disease progressed, Ron, who was a very religious person through all of his childhood and most of his adult life, reached out to his church family only to be banished.  We watched in horror as Ron grappled with his own mortality without the comfort of those whose core beliefs he shared.  Again, stigma was rearing its head.

By the time Ron was close to death, my husband and I had moved back to Atlanta.  We kept in close contact until one day the calls stopped.  I called Ron over and over again just to be told that he couldn’t talk and it just wasn’t the right time for a visit.  After one or two months of that, I called him and said, “We’re coming because we love you and it’s important that we see you.”  We ended up having truly special last moments with Ron that I know he treasured as much as we did, and still do.  We would have missed that time with him had we allowed the stigma attached to death and dying to keep us away.

So, to me, stigma is not an abstract concept.  It’s very real.  And there are myriad ways each and every one of us can fight it.

Melissa, age 54

Michael’s story

In my early adulthood, my relationship with HIV was rather impersonal and academic.  I considered myself very well informed and very responsible, but HIV was still a remote, distant menace that I knew a lot about but didn’t feel personally threatened by.

In college I volunteered as an HIV/AIDS peer educator and HIV test counselor, having been recruited to provide outreach to the gay community on campus.  I was also sexually active in college, but always practiced safer sex and took the occasional HIV test.  Even then, I tested more because I thought it was the responsible thing to do, not because I ever really thought of myself as at high risk.

Even though I was gay and living in a major US city, HIV didn’t impact me in a personal way.  I had no friends who were HIV positive (as far as I knew) and best of all, I was in a long-term monogamous relationship with a man I really loved and trusted.  We got an HIV test together after the first month of being a couple and then made the decision that we would be faithful to each other and that we no longer needed to use condoms.  We had a great life together for about seven and half years.  Then, like many relationships, ours changed and we grew in different directions.  The spring of 2001, my partner informed me that he was leaving.  I was heart-broken of course, but I took some solace from the fact that we remained friends and that we could look back on our relationship with a sense of pride at what we had shared together. 

Two months after we broke up, my ex-partner called and said we needed to have a talk.  He informed me that he was unfaithful during our entire relationship (I actually had no clue), and had many anonymous sex partners.  He then informed me that he had recently tested HIV positive and that I should get tested as soon as possible.  You can image how I felt.  The betrayal was difficult enough to deal with.  Now suddenly this abstract concept that I had managed to keep considerable personal distance from was suddenly on top of me, threatening to take over my life.  The two weeks I had to wait for the results were exhausting, like living in a fog of fear and anxiety.  When the test came back negative I was elated, but my perspective on HIV was forever changed.  Fortunately, I do realize that my ex-partner’s behavior doesn’t mean that I can never trust again.  But my health can no longer depend on a lack of evidence and a sense of invulnerability.  I know now that safer sex and discussions about trust and commitment are an ongoing conversation and that an HIV test is valuable information - information that needs to be updated from time to time.

Michael, age 42

The Conversation

My transition from high school student to college student was full of major changes. In the space about 36 hours I went from a resident of my parent’s home, living in a comfortable and familiar community, to being exclusively responsible for my own care and feeding. Oh yeah- there’s the whole college education thing to consider too.

In an effort to ease my adjustment from high school to college, I opted to attend “Pre-College” the summer prior to my first full semester in college. I can remember feeling as though I blinked my eyes and went from my high school commencement ceremony to carrying the contents of my childhood bedroom up flights of steps. I recall listening for familiar accents or music blaring from speakers that was familiar enough to spark a conversation with the parade of new faces in my dorm. Assisting me with this transition was my father. That was odd. Family tradition dictated that my mother was the one responsible for such undertakings. But this time, my father insisted that he help his son (me) make this step into the world. Surely something must be afoot. Don’t get me wrong. My father typically weighed in on the major events and decisions in my life—but rarely was he so…purposeful. 

Sooner than either of us probably realized, it was time for my father to return to New Jersey and for me to figure things out on my own at school. And while the father-son bonding time was cool, it seemed that our interaction was all groundwork for one of my father’s legendary discussions. Moments before my father departed, he asked me to take a seat and talk (read: listen). I thought this strange because this was “my” dorm room…but I was willing to play along. As is tradition in our family, my father went into his now- storied mantra titled “Four and No More.” Essentially, my father indicated that he was willing to support my college experience for four years. Any education beyond that period would have to be funded by me. That was sobering, but I felt confident I could handle my end of the bargain.

But then my notoriously predictable father did something unexpected. He reached for my overnight kit. I remember thinking, “OK-where is he going with this one?”

Notably nervous and unusually awkward, my father placed the overnight kit on the bed we were sitting beside. All of the contents seemed to be there. Toothpaste, deodorant, toothbrush, but there were some new additions. Square-shaped packages with circular objects in them—condoms. 

My father said something like this, “Son, I want you to know that I realize you are in college and will likely meet some attractive young women while you are here—you may even meet your wife (as fate would have it—I did). You may fall in love and become intimate (Dad-speak for intercourse). You will both have your whole lives ahead of you and son, this is not a time for you to become a parent.”

 I nodded and wholeheartedly agreed—on both accounts. I was looking forward to meeting a young co-ed and no, I didn’t want to get anyone pregnant.  Just as I thought the coast was clear he went further.

“I also want you to stay healthy—when I was growing up there were things guys could catch that could make them sick.” (Whew, just another reprise of the VD talk— one we’ve had before.) But still, he wasn’t finished.

“There are things out there than can not only make you sick—but they can kill you—that’s why you’ll need to use these—every time---no matter what---seriously.”

I remember a shock of sweat hitting my forehead and hands. You see this was the late 1980s. AIDS was just emerging on the national landscape and while I was not a member of risk population (little of which was really known at the time), my father knew enough to insist that I protect myself and others.

Now known as “The Conversation” that talk ranks among the most awkward and insightful experiences I’ve ever shared with my father. My father’s knowledge of AIDS probably extended no further a magazine article or evening news broadcast. But he had the guts to humble himself and have a tough conversation about something that could potentially save his son’s life. For that, I am truly grateful.

I am now a parent myself. As I watch my kids grow, I wonder how and when I will muster the words to have a similar discussion. I take peace in the knowledge that my father’s words rang in my ears throughout my life. I look forward to the privilege and responsibility of having this conversation with my kids in the future as well.

Daniel, age 39

Brother W.

I remember sitting in church one Sunday morning and the spirit was high. The Sanctuary Choir had just sung one of my favorite songs called “God Is.” It was a very emotional moment. Shortly after, it was time for prayer. Brother W. was on the program to lead the prayer. I didn’t think much about it at first, but then I realized that I hadn’t seen him in several months. Brother W. was a nice man and was faithful, so I knew that his prayer would be fervent and it was.

During his prayer, he said something that struck me. He said, “Lord keep me day by day, because I have to live with this disease for the rest of my life, and the medicines cost $5000 a month, but God is my all.”

A quiet shock came over the sanctuary. You could feel the emotions and some people were weeping. I remember I was so shocked that my eyes opened up and I saw the sorrow on the faces of the parishioners. Although Brother W. never said it was HIV/AIDS, everyone knew what the disease was.

After that, Brother W. continued to show up at church. He didn’t let the stigma he surely felt keep him away. I must admit that I didn’t know much about HIV or AIDS, so I carried the stigmas like many. I distanced myself from him and only spoke hellos and goodbyes.

I was probably a freshman in college during that last prayer Brother W. prayed. At the time HIV/AIDS was never even a thought for me. If I knew then what I know now, I would have been more engaging with him and worked to bridge that gap of distance that I created. I would have been less concerned with how he contracted the disease and more concerned about how he was mentally, emotionally, and physically dealing with the illness. Essentially, I would have shown more love rather than fear or apprehension.

I think of him often, especially the prayers that he prayed and the songs that he led. Brother W. never knew it, but every time I saw him walk in that church I saw a light of grace shining behind his head, and I knew that it was God’s grace protecting him.  

Darrin, age 25

My first HIV test

Working in public health, I have spent much of my career telling people how best to take care of their health. Among other things, this “professional scold” line of work has taken the form of campaigns to encourage women to get mammograms, writing articles in women’s magazines about the value of Pap tests, and helping the government tout the benefits of HIV testing.

One problem with this particular profession is that there can be a big difference between telling others to undertake a specific prevention measure and actually doing it myself. Getting my first HIV test is an example of this disconnect.

First of all, I’m old enough to remember when the Surgeon General sent an educational brochure about AIDS to every household in the United States. I recall standing in the open doorway of my house, going through my mail and being somewhat amazed by this particular correspondence. So my experience with HIV goes back to the beginning of the epidemic, when a diagnosis of HIV was, if not exactly a death sentence, then certainly a nudge to get your affairs in order.

But, naively, I never considered myself at personal risk for HIV and did not have an HIV test until 1995. When I was offered one, I was pregnant with my first child. It was a routine prenatal visit, and my obstetrician casually asked me if I knew my HIV status and when I had my last HIV test.

I said, “I’m negative.” But then, I realized that I didn’t really know for sure. Further, I didn’t know for sure that my husband did not have HIV because as far as I knew, he had never been tested, either. So my doctor recommended getting an HIV test, which set off a surprising amount of fear and anxiety. The doctor said all the right things, about protecting my unborn child, about new treatments on the horizon and so on, but in the back of my mind I still thought if I had HIV then I was toast.

Because there were no rapid HIV tests at the time, there was a two-week turn-around time to get the results. I spent those two weeks thinking about the test off and on and dwelling on the irony of carrying new life while contemplating the possibilities of a shortened life for myself. Whatever time remained was probably spent looking suspiciously at my husband. I do recall that they were a long two weeks.

The end of the story is this: The results were negative. I had the baby, and it was a boy. I had another pregnancy, another negative test, and another boy. The second test was easier – it was more a routine part of prenatal care than something strange and different. A lot has changed with regard to HIV in the years since I was first tested – wonderful health and life-extending therapies have been developed, for example, and rapid HIV tests shorten the time between testing and results – but a diagnosis of HIV will still change your life. And, I have never thought about HIV testing in the quite the same way as I did before I actually got one.

Amy, 49

I am a Fan of the Condom

I am a fan of the condom. That’s right. As a person who came of age in the era of AIDS (not to mention the era of not wanting to get a partner pregnant) a condom was one of the things I knew I could do to protect myself and others. It wasn’t always that way. My retail relationship with the condom evolved over time.

With my graduation from college, I knew that the endless of supply of free condoms available at the student health center would come to an end. I would actually have to pay for them. Not a big deal.

I felt sure I could walk right in to a pharmacy, select my preferred product, confidently stride to the cash register, and go on about my day. That was what I thought. I was wrong. Sort of.

I can remember walking into a retail pharmacy with a kind of a “Hey-I-am-sexually-responsible” swagger. That lasted about as far as the magazine rack. I almost immediately became convinced that all of the customers and staff in the pharmacy were scornfully watching me essentially “do laps” as I tried to locate the condom display. I refused to ask for assistance from any of the clerks (or perhaps a conspirator is a better term). I was sure that the store management was watching me through the one way mirrors above the store floor. (Note: there are no aisle signs directing people to the condom section.) After 10 minutes of wandering around the store, I arrived at the correct aisle and was greeted by a dizzying array of products. I looked up and read the pharmacists expression which screamed of “What took you so long son?” In the interest of not drawing additional attention to myself (remember everyone was watching my every move) I grabbed the most familiar-looking box and made my way to the cash register with the box neatly tucked in my hand. I could swear that the cashier was trying to arrest some sort of smile (smirk?). I pressed on, purchased some gum, and made for the door.

As time passed, my delusions of who was watching me buy condoms and what they thought faded. What did not fade was the knowledge that no matter how awkward it may have seemed, having and using a condom was worth the peace of mind and effort.

Danny, 39

Elizabeth’s Story

There came a time when I had to make decisions about how to help my stepdaughter understand sex, as well as issues like HIV transmission.  My husband and I knew, without a shadow of doubt, that we would be conveying a message of abstinence-until-marriage to her. Those are our values and the values that we wanted to teach our daughter.

I knew the latest research and statistics, prevention techniques, and the basic facts about HIV.  I also knew that children have great difficulty with mixed messages. Therefore, after praying about it, I decided that the ideal approach for us was to share the basic facts about HIV transmission and how transmission can be prevented within the framework of our values about abstaining from sex before marriage. We felt that the two messages were not inconsistent.

So that’s what we did.  Elizabeth’s values about herself and her life come from reinforcement of this message at church, at home, and somewhat in her high school.  Thankfully, each of these institutions has supported the abstinence message and she has grown up with both a strong commitment to abstinence from sex until marriage, a commitment to her faith, and an understanding of the issues.  It is amazing to watch her grow in her own independence and to share some of our values while sorting out her own beliefs and values. 

As I wrote this, I asked her what she would like to say about this issue.  When I asked her why she made this choice, she simply said, “It’s just common sense.”

She went on to add that sex complicates relationships.  She is part of a growing group of young girls in her class and in her church that has learned from the mistakes of their peers and share her values.  She continued, “I think it’s wrong to take the most important gift that I could give to my husband away from him.”

She desires to obey God and not have pre-marital sex complicate her life.  Her involvement in our youth group at church and mission trips to countries like Costa Rica have given her a strong sense of self worth that is crucial to protecting her from negative peer pressure that faces our young people every day.  God continues to answer our prayers for our daughter as she grows in her own understandings and beliefs. 

Angie, age 53

Everyone is affected by HIV

I didn’t think I’d have a story to share about HIV prevention, because I don’t have any close friends or family members who have HIV.  Even though I work in HIV prevention and have many colleagues and acquaintances that have first-hand experience with the disease, I didn’t think anyone in my personal life was affected by HIV.  Then I remembered my grandmother.

Nanny is ninety years old.  White curly hair.  A little grumpy.

“How are you feeling today, Nanny?” 

“Horrible.”

She is the matriarch of our family – honored, teased, dearly loved.  She likes to tell dirty jokes.  And she likes to talk to me about HIV and AIDS.

She has a nephew who is HIV-positive. 

She’s been telling me about John ever since I started working in HIV prevention.

“You know my nephew John - he’s your mother’s cousin.  He has AIDS.”

When she first told me, it was like she was telling me a family secret.  Some gossip.  But now when she tells me, she also tells me about John – where he works, what he likes, how he is doing.  And I try, as best I can, to educate her about HIV – correct the misinformation, share with her what I know, and just listen.

John is a gay man, in rural America, living with AIDS – a survivor.  And he is part of my family.  And Nanny loves him so much.  I can tell every time she talks about him.  A much loved member of my family is living with AIDS.

My family is probably no different than yours. We have our high achievers and our kooks. We have drama, even if we don’t always talk about it. And having a family member with AIDS really hit home to me just how widespread this epidemic is. Because whether you know it or not, chances are there is someone in your family or circle of friends who has HIV. This epidemic is not over, not by a long shot. We all have to work together to stop this epidemic.

Erin, 34