Just like you, each of these people has a unique story. We can learn from others who have faced similar obstacles, have moved forward with treatment options, and are living their lives with HIV.
It's important to work with your healthcare team to find the treatment that’s best for you.
These stories reflect the real-life experiences of the individuals below. The opinions expressed are their own and do not necessarily reflect those of ViiV Healthcare. They may or may not be taking a ViiV Healthcare product, and their stories are not an endorsement of its products. These stories are sponsored by ViiV Healthcare.
The following individuals may or may not be taking a ViiV Healthcare product.
Luis, Bronx, NY
Diagnosed with HIV in 1993
This individual may or may not be taking a ViiV Healthcare product.
Get to Know Luis
A big part of my journey toward accepting and understanding my HIV happened before I was even diagnosed. Back in the early '90s, when HIV/AIDS was a new epidemic and people were dying left and right, I had a close friend who had AIDS. All through my own time dealing with being HIV positive, I remembered watching my friend suffer, and how he cried and moaned because he was in severe pain.
When I found out I was positive, I thought that my friend's future would be my future. I couldn't accept what was happening to him, just like I couldn't accept what was happening to me. It put me in a dark place that lasted a long, long time. Maybe some of you are in that dark place right now. Well, I want to tell you that even if it doesn't feel like it, that darkness can end. When I remember my friend now, I don't think of his suffering. I think of his courage, and his light, and of the way he'd wake up every morning and play House music. One day, you won't think of the bad either. One day, you'll look back on the hard times and remember the good. I know I do, though it was hard getting here.
Coming to Terms with Being HIV
For months, I kept my diagnosis and my feelings to myself. I kept blocking it out, scared of being judged, but also judging myself. Still, I wanted to talk to someone. I wanted to tell my mom. I wanted to tell my friend. I would go visit him in the hospital, bringing him food, candies, and popcorn from the movie theater, and I would sit there wondering what he felt like when he first found out that he was positive. Did he curl up in a ball and cry like I did? Did he have the same concerns I did? But I couldn't bring it up—I was too scared.
I was diagnosed in October of 1993, but it took until April of the next year for me to finally gather the courage to tell my friend about my diagnosis. I showed up at the hospital ready to talk, and that's when I learned he had passed away that evening.
This put me deeper into depression and I went into what I call "solitary." For five long years, I cut my friends and family out of my life. That was hard because my family and I are really close. My one sister is my best friend. And my mom? Nothing can beat her cooking! But I couldn't call them or face them. I couldn't face anyone. I was mad—mad at myself and mad at the guy who had given me HIV. I had so much self-hate and despair; I just didn't know how I'd ever survive.
But I did survive. Even when others were dying of HIV/AIDS and tough things were happening in my life, I was still alive. I started wondering, Why am I not dead yet? That made me really reflect on myself. It's funny; it took until I was 25 years old to really look at myself in a mirror, and instead of seeing the things I didn't like about myself, I saw all the good. I realized I am beautiful and I do love myself. I realized I didn't have to make my friend's story with HIV/AIDS my own story.
A Personal Turning Point
Before he died, my friend reminded me of the common phrase 'this too shall pass.' I didn't believe the words for five years. Now, this too shall pass is my mantra. I tell people now that even though it's hard accepting your diagnosis, however you need to deal with being HIV positive, deal with it. Deal with it in your own way…as long as you DO deal with it.
It took me many years, but I recovered from my denial. I survived my five years in depressed solitary, and started getting my life together. I became happier, grounded, and more organized than ever before. I was working and I had gotten close to my family, especially to my sister, again.
Talking Openly with Doctors
I had bounced around between doctors a lot for my HIV, especially during those years in solitary. Those doctors talked to me about my emotions and how I was feeling, but they never talked to me about treatment. Even if they had, I wouldn't have listened. I had never wanted to be on HIV treatment before, mostly because I remembered what my friend went through, sitting in his bed with that handful of pills. But times and treatments have changed. So when my viral load got really high, like it wanted to party, I knew I needed to dial that party down.
It helped that, by that point, I had an amazing relationship with my doctors. It took a lot of trial and error, and a willingness to be honest about my situation. When I didn't connect with one of my doctors, or when I didn't feel like I was getting the best medical advice for my situation, then I recognized that and refused to accept it. That led to a lot of searching and a lot of stops on the subway, but eventually I found doctors who I felt were culturally sensitive and who I could get along with…and they've been wonderful. Really, the key has been open communication. My doctors listen to me—about my health concerns and even about a few guy troubles! They know me, and they are invested in me. But beyond that, they also make the effort to talk to me and make sure I understand what they are saying.
The Decision to Start Treatment
Knowing that I had a voice and some control of the decision-making process, I decided I was ready to try treatment. My doctor said she wanted to make sure I had a treatment that fit my lifestyle. She sat down with me and took the time to go over a few options—including the potential side effects—so that I could make the best decision for me. But after going over all of that information, I wanted us to decide on a treatment regimen together. And we did; we decided on a once-a-day regimen. My doctor felt good about this treatment as it helped to lower my viral load.
Learning to Love Myself
I credit my progress to my medical team, becoming spiritually grounded, maintaining a healthy lifestyle, and finding purpose in my life. But it's my love for myself that's kept this fight going. I used to let fear make decisions for me. I'd let someone else's bad experiences influence my outlook. But today, I can say that I'm finally at a place of true acceptance. I was shaped by these experiences personally, and the career that followed was shaped by them too. I got my degree in health services—the first in my family to get a degree!—and I became an advocate in many HIV programs. I started to go to a peer program to further enrich my mind, heart, and soul. The new support I found from other people who have faced the same ordeal helped me regain my perspective and once again be comfortable in my own skin.
If people ask me now, "How do you feel?" I say that I feel like I can get up every morning and look in the mirror with a big smile on my face. And I can do my whole routine—shower, shave, all of that—while singing. And humming. And whistling, just like my friend who passed away did. And now I'm playing my own House music. So, I share my story to remind you that there's always a light at the end of darkness; it's not always dark forever. This too shall pass and when it does, there's music on the other side. So be strong, have hope, and keep dreaming your dreams.
Clint, Chicago, IL
Diagnosed with HIV in 2005
This individual may or may not be taking a ViiV Healthcare product.
Get to Know Clint
This is a personal story, but I don't mind sharing it because I hope it will help others to learn from mistakes I've made, and avoid some of the pitfalls I've fallen into.
My story starts in the spring and summer of 2005 when I was stressed out, isolated, and the only thing I had in my life was work. I was trapped in a miserable existence. But then the unthinkable happened, and my life seemed hopeless.
At that time, I was living in a small Midwestern city with a total population equal to only a couple of San Francisco neighborhoods. I had no friends, there was certainly no gay community, and my job required me to work 60-70 hours a week making very little pay and with no upward movement. I was basically a poster child for depression, didn't care about the long-term consequences of my decisions, and I started to engage in risky behavior.
Coming Down with “Familiar”
In June of that year, I came down with the "flu." I was nauseous all the time, had a mild fever, and completely lost my appetite. In just a few weeks, I lost almost 20 pounds. One day, I was sitting at my desk going through all of my symptoms when I realized that I recognized these symptoms. I'd been warned about these symptoms. They sounded like symptoms of HIV. I thought back to all my risky behaviors and realized, It's entirely possible that I do have HIV. I was worried and scared, so I made an appointment to see my doctor the very next day.
When I walked into my doctor's office, I learned that he was actually on vacation, so instead I saw his nurse practitioner. We sat down and went through my symptoms. She said that I probably had a bacterial infection or a stress reaction to my job and the fact that I was a gay man in a conservative town. I thought that made sense, but I asked her to include an HIV test just in case. She seemed confused by that and said, "HIV doesn't have any symptoms." I insisted she just put it in there anyway, and I'm really glad I pushed her on the issue.
A week went by and I called the office to get my lab results. After a few moments on hold, I was told everything had come back normal, and that I was fine and healthy. Again, they said I was probably stressed out and told me the doctor would call me in a day or so with a prescription for an antidepressant. By that point, I'd taken a few days off from work and was starting to feel better, so that explanation made sense to me and I allowed myself to feel relieved.
Getting an Accurate Diagnosis
A few days later, I was at an all-day conference and turned my cell phone off. When I turned it back on again, I had four different voicemails from my doctor's office: I needed to call them right away; Could I come in tomorrow?; They'd made an appointment for me for 9:00 AM; and, finally, they wanted to make sure that I'd gotten their voicemails. I thought this was overkill because all I needed was an antidepressant!
When I showed up at the doctor's office, the nurse who took my vitals gave me a strange look. Then she took my folder with her when she left the room, which was odd since, in that doctor's office, they always left the folder on the exam table. That's when I realized something wasn't right. A few moments later, the nurse practitioner sat me down, put her hand on my knee, and told me there had been a mistake. One of my tests had come back positive. I was thinking it might be the bacterial infection she had mentioned earlier, so I asked what pill I could take to make it go away. That's when she said it was actually the HIV test that was positive...I was HIV positive.
My Initial Reaction
The next few minutes were a blur. I remember getting up and walking around the doctor's office, and then the nurse practitioner gave me a pill to help me relax. She told me to go home for the day, but the news was too overwhelming for me to go home and think about, so, I went to the office and focused on the stack of work waiting on my desk. When a co-worker tried to talk to me, I just couldn't hear what he said. I was in no condition to spend my day at the office after all, so I ended up going home.
I was lying on the couch on that hot, sticky day when the nurse practitioner called to check up on me. I don't remember what I told her, but it must have been something alarming. After a few minutes on hold, she told me she had activated their suicide awareness line and an ambulance was coming to take me to the city's psychiatric ward. She told me I could come by myself, or I could come forcibly. I don't think she realized I lived literally across the street from the hospital. So I forced myself to walk over then told the ER who I was and that they were expecting me…though I don't think they were expecting me that quickly!
I was given a sedative and slept for the rest of the day and night. When I woke up the next morning, I wanted to go home. I knew I had issues, but I also knew I didn't want to end my life. I talked to the medical staff, asking them to release me, but because of some hospital policies, I was forced to stay there for a total of five days. It was by far the loneliest five days of my life.
Trying to Get Answers
Once I regained my freedom, I made an appointment to see an infectious disease specialist. I was looking forward to talking with someone who knew about HIV and getting a lot of my questions answered. It turned out his practice was mostly vaccinating people about to go on vacation. When I asked him how much HIV work he had done, he said HIV was like any other infectious disease and he was qualified to treat me. I didn't know any better, so I believed him. He led me to think that I had about seven years left: four to five years of happiness and healthiness followed by a couple years of sickness and a year of hospice. I asked about taking medication, but he said that because the medications had a lot of side effects, I shouldn't start until my final year.
After that bombshell, I started drinking heavily. If I wasn't depressed before I certainly was depressed now. Every day on my way home from work, I'd buy a bottle of cheap wine and a pizza, then I'd just drink and eat until it was time for bed. This pattern continued for months, and I don't know how long it would've lasted if a friend of mine hadn't asked me to join him and his friends for a long weekend in Michigan.
At one point during that trip, it was just me and one other guy who I didn't really know sitting in a café on the lake in this beautiful resort town. As we were chit-chatting, he casually mentioned something about his HIV medication. I stopped him and asked if he was HIV positive. He said he'd been positive for 10 years and thought I knew. That's when I told him that I'd just been diagnosed HIV positive. Then I realized he was the first person I'd told I was positive besides a medical provider, and the first person I told who was positive himself. I just started bawling my eyes out at this café and I'm sure everyone was looking at me funny, but I didn't care. He got out of his chair, sat next to me, and gave me a hug. He shared some of his stories with me, like I'm sharing mine with you now. On the way home, we stopped for lunch, and he and his partner gave me a spare key to their condo in Chicago. They said their spare room was now my second home. Anytime I wanted to visit, I just needed to give them a day's notice and that place was mine.
Getting a Second Opinion
I talked to somebody about what my doctor had told me, and he said it didn't seem quite right. He encouraged me to find a doctor who really seemed invested in me. Then he gave me his doctor's name and number and recommended I see him for a second opinion. While that doctor was not covered by my insurance, I decided it was important enough to get a second opinion that I'd pay for it myself. So, a couple weeks later, I drove back to Chicago with a big folder of all my lab work, and sat anxiously in the small waiting room while admiring the pink walls, purple decorations, and erotic male artwork.
In the exam room, the doctor asked me a few questions and started flipping through my lab work, shaking his head and saying, "No, oh no, this is all wrong...this is ALL TOTALLY WRONG." He closed the folder and slid it across the table as if to throw it away. Then he said, "You need to start medication, and you need to start now. I don't care that I'm not covered by your insurance; we'll make it work. I'm your doctor now." I was stunned by his conviction, and grateful for his generosity. I knew in that moment that I had found the right doctor.
After some research, he found out that I qualified for a clinical study. So, the next week, I was given four bottles of pills. Two bottles were full of real medication, and the other two were sugar pills, but neither of us knew which was which. I had to take both regimens for two years to stay compliant with the study.
I remember going home after that first visit and standing in the kitchen with the glass of water and those pills. I can still see them with their bright colors against the dark granite countertop. I realized that once I started taking those pills, there would be no turning back: this was a lifestyle change for sure. But I knew the life I had then wasn't good, and it probably wouldn't get much better unless I made some serious changes. So I took a deep breath, took all the pills, and hoped for the best. Within a couple weeks, taking those pills became just another routine. I had to take them twice a day, and I found it was easiest for me to take them at lunchtime and before I went to bed.
That study required monthly lab work, so I had an excuse to go to Chicago! I started looking forward to those trips, and with each trip my lab results improved. In the span of four months, I started to feel better. Since I was taking steps to care for myself and spending time with people who were a positive influence on me, I stopped drinking as much as I used to. Life was just completely different.
Where I Am Today
Things have continued looking up for me. Today, I consider myself pretty happy and healthy. This disease forced me to take control over my life, instead of continuing to let life take control over me.
Now I have a strong group of friends I can talk openly with, as well as a wonderful doctor who understands and supports me. It's that support that's helped turn things around for me. So now, when I share my story with others who've recently been diagnosed, I give them all this same advice:
Find your own support network—people who will truly listen and understand what you're experiencing. Find a doctor who you have a connection with, and who you can be open and honest with. Then, if your doctor says it's time for you to start a treatment regimen and you are ready, start it. After all, it's better to fight the disease with treatment, your healthcare team, and supportive friends instead of fighting it all by yourself.
Patient stories are a featured part of our Couch Talk program – free HIV educational events in local communities across the country. Find one near you at the link listed below.