Surviving With Pride
The month of June is typically jam-packed with parades, events and festivities that bring many of us in the LGBTQ community together to revel in our uniqueness, pay tribute to our leaders, and honor achievements in our ongoing fight for equality.
For those like me who are long-term survivors of HIV/AIDS, there is even more to celebrate—the fact that we have survived long enough to be able to continue to achieve our own personal goals, have a career, or even start a family. But surviving HIV/AIDS can often come with its own set of issues, such as isolation, depression, substance abuse, stigma, and early aging and mortality.
Over the last 30-plus years I’ve lost hundreds of friends, acquaintances and colleagues to HIV and AIDS. In the 25 years since I first tested positive and began treatment, I’ve developed strange conditions such as thrush, kidney sludge, and shingles. I’ve been poked, prodded, and bled, and made out living wills and medical powers of attorney. I’ve stood in protest lines and marched on Washington, walked marathons and participated in a bike ride. I’ve fallen in love, and broken hearts.
I’ve probably been on ten different drug regimens during that time, which most likely saved my life but definitely have taken their toll. My viral load is undetectable, and my CD4 T-cells and CD4 percentage are near what a normal, healthy HIV-negative person my age might be expected to have. But as the population of people living with HIV and AIDS ages (approximately 50 percent of those living with HIV are now over age 50), we’re beginning to understand that there is much more to the story than simply numbers and percentages. Underneath the surface of the syndrome we know as AIDS lies a darker and much more sinister enemy. Those of us who have come through the fight know that enemy intimately, and we have the battle scars to prove it—but we need new tools and weapons to fight it.
I was first diagnosed with post-traumatic stress disorder (PTSD) shortly after I tested HIV-positive in 1989 and went into psychotherapy. PTSD, as defined by the Mayo Clinic, is a mental health condition that’s triggered by a terrifying event— either experiencing or witnessing it. Not everyone who experiences the event will develop PTSD. Some may just have difficulty coping for a while, but eventually they’ll adjust and get back to their “normal” life. It’s only when symptoms (which can manifest as intrusive memories, avoidance, negative changes in thinking or mood, or changes in emotional reactions) start to cause significant problems in social or work situations and relationships, that it becomes a more serious issue.
While my PTSD was related to childhood sexual abuse, it was triggered by living in the midst of a holocaust and ending up testing positive myself. The disorder was no less real to me, however, and I still struggle with the effects to this day.
Just as veterans who return from war and who may have difficulty re-assimilating, long-term survivors of HIV/AIDS can often feel out of place and useless. In a perfect world we would pay proper respect to our own soldiers, and let them know we appreciate all that they’ve been through. Programs and services designed and tailored specific to our own unique needs as AIDS veterans are desperately needed. It’s time for us to create the structures and support systems that will help our veterans financially, mentally, and physically, well into their golden years. They—we—deserve no less.
In June, Positively Aware magazine and its publisher, the Chicago-based HIV service organization TPAN, will launch The Reunion Project (TRP), to help long-term survivors of HIV and AIDS honor our past, examine resilience, and identify and develop successful strategies for living—today and into the future. The Reunion Project will be a series of summits and activities happening across the country, the next one being held in Palm Springs in November.
Those now coming into young adulthood never knew a time when HIV didn’t exist, and for their entire life, effective treatments for HIV/AIDS have always been available—in other words, for them it’s always been a manageable chronic illness, such as diabetes or hypertension. While fear motivated us to fight to survive early on in the epidemic, it’s no longer an effective deterrent or motivator for those who aren’t experiencing the same sense of loss on a day-to-day basis. The fear of death from HIV/AIDS is now a distant memory, an abstract concept.
They say that with age comes wisdom—I’m not sure if I’m the best example of that, but I do think there’s another exciting opportunity for long-term survivors of HIV and AIDS, and that is to engage the next generation to talk about some of the experiences we’ve been through, challenges we’ve overcome, and triumphs we’ve achieved, to try to start to bridge the gap that currently exists between us. And I’m sure we could learn a thing or two from those who are, or will soon be, leaders in their own right.
It’s necessary to hear and share our stories with one another, for they define us. It’s where we come from; it’s who we are. We have the opportunity to learn from our past, and to mentor and guide an entirely new group—while honoring our history, and the fallen.
Jeff Berry is the editor in chief of Positively Aware magazine, and Director of Publications at Test Positive Aware Network in Chicago. Find him on Twitter @PAEditor.