What Is an HIV Long-Term Survivor? Five People With HIV Grapple With the Question
HIV Long-Term Survivor's Day is here! I have often wondered whether I am considered a long-term survivor. I've been positive for only 13 years. I personally don't know whether I am considered a long-term survivor, but it has somewhat felt that way. I've buried friends that have denied their own HIV status; because of stigma they felt from family and the outside world, they let illness consume them instead of facing it head on. But I was born in 1979 and will never remember the early epidemic and how there were people dying every day of AIDS. I decided to interview five people who have been HIV positive between 10 and 30-plus years to better understand what being a long-term survivor means and to learn about some of the challenges they face or may face.
The people who spoke to me come from different backgrounds, one is an African-American gay man, and two are Caucasian gay men. One is a woman who found out she was positive when she was pregnant, and the other is a heterosexual hemophiliac. I wanted volunteers from a diverse circle to get different perspectives on what they thought a long-term survivor is.
Justin B. Terry-Smith: What is your definition of a long-term survivor, and do you consider yourself one?
Scott: I consider 10 years long-term; so, at 20-plus years, I am a long-term survivor.
Dwayne: I don't know the official definition, but HIV has been living with me for 27 years. So, I do consider myself a long-term survivor.
Shawn Decker: It's funny -- it changes the longer it goes. When you put out the request on Twitter to speak with long-term survivors and said "10 years or more," I thought: "Ten years? Really?" That didn't seem long-term at first glance. But then I remembered how I felt when I reached the decade milestone. It was a huge symbolic victory. My attitude on living with HIV shifted so much in that time. After my diagnosis in 1987, as much as I wanted to think I'd be OK, when I really thought about it, I feared that I wouldn't make it that long. In 1997, I was writing a column for POZ magazine; I could never have predicted that because I never thought I'd open up about my status.
Mike Rupert: I was born in 1970 and lived through the start of the epidemic. My definition of a long-term survivor is someone that lived through the difficult time when there weren't drugs available that didn't have horrible side effects. I have friends that lived to tell the tale of that time.
Brittany Cameron: On one hand, as someone who was born in the '80s, I didn't experience the AIDS epidemic in ways that other long-term survivors have. I recognize that my experience has been significantly different. On the other hand, I was diagnosed with HIV at 20 years old. I am 32 now. In eight years, I will have lived with HIV in my body just as long as I had lived without it. Soon, I will have lived with HIV in my body longer than without it in my body. I have lost many to HIV, and I have been surviving long before the virus entered my body. I think it's something to really think about -- how we define ourselves. I don't typically identify as a long-term survivor because I didn't experience the epidemic (pre-1996). Depends on what working definition you are using.
JBT-S: As a long-term survivor what specific obstacles do you face?
Scott: Changing jobs due to health care coverage concerns and co-pay, deductible costs.
Dwayne: I'm fortunate that I live in an urban area where there are a variety of services, so I don't face as many obstacles now. However, when I was first diagnosed in 1991, there weren't many resources and, although HIV stigma exists today, back then HIV was a death sentence.
Shawn Decker: My HIV medications have caused my cholesterol to skyrocket over the last 10 years. My infectious disease doctor had been trying to get me on some medication to lower it. It wasn't until I saw a new primary care physician that I changed my mind. He said that he'd never seen numbers as high as mine. He said his main goal was making sure nothing happened with that out of the blue in my 50s, 10 years down the line. That's the main shift for me: With hemophilia, it's about treating a bleed in the moment. With HIV, it's been about taking my medications to keep my viral load undetectable. But now, it's about considering the whole picture and making decisions that I'll be thankful for if I'm fortunate enough to be around for another 30 years or so.
Mike Rupert: The biggest obstacle I have faced is the internal and external stigmatization of people with HIV. My health has been excellent so far, and I'm grateful. I struggle with the ignorance and fear that still exists.
Brittany Cameron: Recently, I have really been thinking about my health, how much more at risk we are of comorbidities [the simultaneous presence of two chronic diseases or conditions in a patient] and such. It scary.
JBT-S: Have intimate relationships or relationships been an issue being a long-term survivor?
Scott: Yes, because I don't like to disclose my status till I feel I can trust someone.
Dwayne: Not as much today as it was years ago. If I'm interested in someone, I bring it up in the first few conversations because I want the other person to have a choice and possibly help them with their own disclosure.
Shawn Decker: I was diagnosed young, at age 11. Right before middle school. People think that is so horrible, but any diagnosis is ill-timed and presents challenges. The plus side is that by the time I was a long-term survivor at age 21, I'd opened up about my HIV status. I wasn't afraid of people finding out about it. In fact, I was the one telling everyone whether they wanted to know or not. At all stages, I really have been lucky in love. Of course, I've faced rejection because of my HIV status. But on the flip side, any meaningful relationship I've ever had has been with someone who was willing to learn about it -- to get closer to knowing me instead of running the other way.
Mike Rupert: I've had partners that have been very accepting. My issues with intimate relationships have been internal. Most of my partners have been negative, which has made me afraid of infecting them, even though I know logically that would be difficult. I've also wanted to keep that fear to myself, which makes it fester. Those dynamics are not conducive to a relationship.
Brittany Cameron: Luckily, not. My partner and I have been together ten years come November.
JBT-S: What do you think the younger generation of HIV-positive individuals thinks of long-term survivors?
Scott: All the younger poz people I meet and disclose to seem to admire and respect me, and some have wanted my opinion and advice.
Dwayne: I think it would depend on how informed they are. However, my guess is that they aren't really concerned because they've got their own issues through which to navigate.
Shawn Decker: I have no idea! I hope they think we're awesome sauce.
Mike Rupert: In general, younger gay men haven't grown up with the same fear that I did. That's a good thing because that fear crippled me as a teenager. The negative side of it is that new infections, especially in black gay men, seem to be on the rise. The fear did help to make my generation more aware of prevention and protecting ourselves.
Brittany Cameron: I can't speak for others, but for myself, I honor them. Although I was born in 1985, I recognize the loss and the work they did so we could be here today. However, I think it's also important to remember that we have a collective history in this. When the long-term survivors of the '80s are all gone, who will be the long-term survivors then? The next generations. We need to work collectively to ensure that our stories are told and held in high respect. I think it is important.
JBT-S: Do you think you are looked down upon or admired being a long-term survivor?
Scott: I feel older hetero's look down on poz people, while younger gay and straight people are more understanding and accepting.
Shawn Decker: I think most people are happy to hear about long-term survivors -- especially those who lived through the early years, whether they are living with HIV or not. It's been over 30 years, but everyone remembers the terror of those initials news reports, incidents of discrimination.
Mike Rupert: I'm not sure that many of the people in my life would see me as a long-term survivor. I don't know that I experience either because of the time I have lived with HIV.
Brittany Cameron: I'm not sure if people recognize me as someone who is a long-term survivor. I didn't experience the epidemic, so depending on the definition, am I one?
JBT-S: What advice would you give someone who has just made the transition to HIV long-term survivor status?
Scott: Keep a positive attitude and stay on your medication as long as possible so you always have a lot of meds options for the future.
Dwayne: Just keep doing what you're doing to maintain your status.
Shawn Decker: I'd say to be mindful of your overall health. Look out for long-term side effects of medication and learn how living with HIV can affect other areas of your life. Also, stay on top of your mental health. Unacknowledged depression can be especially disastrous for people living with HIV. Don't let it sneak up on you.
Mike Rupert: Probably the same as I would give to someone newly infected. Take care of your health. See your doctor. Meditate. Live your life. Long-term survival is possible, so sitting around and worrying about it does not help your physical or mental health.
Brittany Cameron: I like to remind people we are still here. It is another year we lived with HIV. That's important. It's important to acknowledge because many didn't get the opportunity to be here still. Celebrate that you are still striving. That is important!
JBT-S: As you can see there were different perspectives. So, I ask you the reader, what do you think a HIV long-term survivor is?
This transcript has been lightly edited for clarity.
Native Marylander Justin B. Terry-Smith has been living with HIV since 2015. He has a doctorate in public health and has been an HIV activist and writer in the Washington, D.C., area since 1999. He also writes for A&U magazine, and you can find him on Twitter, Instagram, Facebook Fan Page, and Facebook.
Read Justin's blog, Justin's HIV Journal.