Well Beyond HIV Stories™
Greg, 54/ Diagnosed in 1989
"I mean, I'm 54. How cool is that?"
I was diagnosed with HIV in 1989, two days before Thanksgiving. We had a huge holiday gathering like we always do. But I couldn't grasp being grateful for anything. All I could think about was how I was going to tell my friends and my family. At that time I was making a lot of destructive decisions and living in denial.
In 1991, I was diagnosed with AIDS. It took a year before I told my friends and family the news. I had created this whole dramatic scene in my head, but everyone was actually very loving when I shared my story. I'm thankful that my experience living with HIV and AIDS has been smooth and supported. My friends and I have come to believe that it's because of my positive outlook.
Now I'm living my life and giving back to others with my disease. In 2010, I moved to San Francisco to celebrate turning 50 and to become part of a community of people who were HIV positive. In 2013, I volunteered for an AIDS service fundraising bicycling event, AIDS/LifeCycle, and last year I did my second AIDS ride. Now I'm a board member for Positive Pedalers and I ride to eliminate the stigma behind HIV/AIDS.
I spent so many years in fear of the disease and dealing with stigma. Right now, I owe it to myself to live. I've become confident enough to not care about stigma anymore, and I think that comes with aging.
Nilda, 63/ Diagnosed in 1988
"I'm confident in myself. I've gotten a Master's in life."
I learned I was HIV positive in 1988. It was devastating. At that time I was a year and a half in recovery. I had quit smoking, drinking and using drugs. Now, on top of those hurdles, I was HIV positive. I thought I wasn't going to make it. I didn't know anyone else with HIV and felt incredibly alone.
When I told my boss I was positive I lost my job as a purchasing agent. My doctor called my boss and explained what HIV means and how the virus is transmitted. I'm thankful for my doctor because my boss then asked me to come back. There was hope.
When I went to my first HIV support group, I was in a room with 32 guys and another woman. We didn't know any other positive women for months. Then I started volunteering. To this day I don't know why I did that, but it's been my survival. The people I met – it was like a love. The support was tremendous. We're a very special community. Even if we don't know each other, there's still a connection.
My work volunteering with positive women brings me strength, joy and a sense of family. I share information about the virus, talk to them about being older, about their children, their grandchildren and how they feel. It gives me purpose, teaches me a lot and puts me together with some wonderful women.
Living well with HIV is my mental state. My positive outlook makes things a little easier. I wasn't like that before. I attribute this outlook to the support from the women I've worked with. I just feel so surrounded by love. These women watched out for me and the support was tremendous when I needed it most. I've been blessed.
Jack, 73 / Diagnosed in 1993
"I do everything I can to enjoy each second."
My doctor recently reminded me of what I said when I was first diagnosed. I told him that I didn't think I would make it to 60. In August, I'll be 74 years old.
Since my diagnosis, in 1993, I've experienced some aging-related health conditions and I'm dealing with hepatitis B and a recent diagnosis of a condition that weakens my skeletal muscles, but I am grateful that it's all under control because of medication.
Every day I wake up and think, "I have a whole day ahead of me." I do everything I can to enjoy each second. Living with HIV forced me to appreciate the simple things and savor the positive. I get excited over a good parking spot or when my car is clean. These little things keep me going and keep me healthy.
Half of the battle is physical. The other part is mental. I try to keep negativity out of my life. I work hard at thinking young and being positive. I dance around the house by myself. I love learning. I do things that challenge and stimulate me – it makes me feel younger.
Being HIV positive isn't number one on my list anymore – it's third. Growing older is my main concern. Second is doing things that make me happy. And third is taking care of my HIV. With each birthday, I think – "I've made it through another year." I'm so grateful! I've been very lucky.
Frederick, 61 / Diagnosed in 1996
"Don't be scared of aging, live for today."
I didn't know why I was sick. They didn't know why I was sick. I was always in denial, "Oh, I don't have that, I don't have HIV." Then, I was diagnosed. The doctor brought me into a room and he said, "I have some bad news to tell you, but maybe good results. We found out that you're positive." I just broke down and sobbed for about 20 minutes. He let me get it all out, and he said, "Now I'm going to tell you about the good news. We can treat this as best we can, but you have to stay vigilant with the treatment."
I did just that. Then my son came into my life and he truly gave me something to live for. He has provided me motivation to stay healthy and beyond the gift of life that he gave me, my grandson was born. He was instantly my whole heart. I've been there for him since he was a little baby.
I finally told my grandson when he was nine that I was HIV positive. He said to me "Why didn't you tell me Grandpa? You didn't think I would love you? I would love you anyway, Grandpa, you know it doesn't matter!" My grandson is a handful, but he sure keeps me in line! He'll say to me "Grandpa, you shouldn't eat that" or "Grandpa, let's exercise and do something!" This young kid... I had to reach out and give him a big hug.
I now have three beautiful children in my life who I consider to be my grandbabies, and they bring me such joy. Once you're involved with living, the dying thoughts go away. God brought me through all of this, so I figure he kept me here for a reason.
Orlando, age 50 / Diagnosed in 1985
"Turning 50 this year is a huge triumph for me."
It was 1985 when I received the news that I was HIV positive, but I know I was exposed to it a few years prior to that from a blood transfusion. My little brother was the first one I told. He was 9 at the time, but a really smart kid. I felt like he could handle it. We were extremely close. I explained to him what was happening; I said I would be fine, that I wasn't going anywhere anytime soon. He asked me, "You're going to make it to my graduation, right?" And I assured him, "Oh, definitely. I will be there."
When he graduated from grammar school, I was there smiling, so proud. When we were taking pictures, he said to me, "So, now you are going to be here for my high school graduation." I undoubtedly said, "Absolutely, I'll be there."
When he graduated from college, I reflected, "Wow, 12 years have gone by, and I was able to keep my promises. "Are you going to get your master's degree?" He said, "Well yes, but not right away." I thought, 'Oh. What am I going to do now?' Because I realized for so many years, I've been making him one of my goals to live.
I read once that a key element of being a survivor is you make long-term goals. So, I have to come up with some other long-term goals here! That is when I just decided I was just going to live. And so my message to everyone is this: If you are HIV positive, work with your doctors and other providers to ensure you get the best health care you deserve, but also to make long-term goals to give you something to live for. This disease is not a death sentence.
Sylvia, age 51 / Diagnosed in 2003
"I'm a survivor. I've survived domestic violence and substance abuse and I'm surviving HIV."
In 2003, I was in the hospital for pneumonia and they asked me if I wanted to take an HIV test. I was so sick that I didn't care what kind of test they took; I didn't think about it. I certainly had no idea that it would come back positive.
While I didn't want to stress my youngest daughter, who was pregnant at the time, or cause my oldest to think she needed to leave college to take care of me, I decided to tell my family immediately. I think they were surprised that they didn't hear any panic in my voice. Being told that I have a life-threatening—but manageable—illness with no known cure forced me to want to live.
Some people make a bucket list when they're going to die. My list was, 'What are the things I've always wanted to do?' I've done a lot of those things in the last 12 years. My grandkids are number one—I love doing things with them. I've gone back to school. I've traveled. I'm living.
I've never felt like, 'Poor me.' I'd been through some things in my life. If I made it through that, I can make it through this. I don't feel like there's too much that I couldn't survive. I believe in overcoming obstacles. And no, I haven't done it all on my own.
There have been so many different unknowns in my life. Now, I know that I want to continue to encourage other positive women and see them blossom. I know that I want to take my grandkids around the world. And, I know I have to stay well enough to be able to do those things. That's my plan and I'm sticking to it.
Michael, age 52 / Diagnosed in 1986
"The aging process for me isn't something I look at as a deficit."
I moved to New York right out of college, just two or three years after the first AIDS cases hit the news. I was in a relationship at that time. He went to the dentist one day, and the dentist said, "I think you better go see a doctor."
We both found out together. And at that point, I think my partner was much further along than I was. Because of my involvement in AIDS activist groups, I had a lot of friends who were HIV-positive. My partner died in bed next to me, sleeping one night.
Those experiences fueled my self-empowerment, my desire to create social change, rather than retreat. Physicians didn't know very much about HIV at that point, so we empowered and informed ourselves. One reason I think I'm so healthy is because I educated myself and took an active role in making decisions about my care.
I don't think I would be as much of a social change agent if I didn't find out I was positive in 1986. It helped me be grateful for my life. I'd probably just be humming along, and I wouldn't have been such an activist.
I always thought I had two years to live. And after two years, there was another two years. And after that, another two years, until I realized that I was getting healthier. Then there wasn't any more two years; it was more like 10 or 15 years. For me, HIV sits in the background. I accept it, but it doesn't control me.