I watched the young, thin man leaning heavily on his cane as he struggled up Seventh Avenue. The winter wind blew through the New York streets in powerful gusts that nearly toppled him. Looking painfully weak, every step he took was as deliberate as it was uncertain. I came forward to assist him when he stumbled and I saw that he was nearly totally blind. As he grabbed my hand I recognized the terror in his eyes. We both understood he was dying of AIDS.
It was 1985 and, at that time, I was unaware that the virus had already begun its slow-motion destruction of my own immune system. Pneumocystis pneumonia (PCP), Kaposi sarcoma, dementia, and blindness from cytomegalovirus (CMV) were terrorizing the gay community. Painful death was everywhere, one after another, countless friends and strangers falling away. Those of us left behind, the survivors, the caretakers, were battered by fear and stigma, anger and hopelessness, and most of all, a deep, numbing grief.
There was light in the darkness. The crisis led to tremendous acts of selflessness. Ignored by government and lacking systems of care, stran-gers stepped up to assist those suffering from AIDS. The larger community, including our lesbian sisters, created soothing spaces for those in their final days. While some of us were fortunate to have supportive families, others were not and they too were embraced. We cared for those rejected by fear and stigma. We buried those whose churches refused to do so. Persistent efforts of advocacy and courage, such as those of ACT UP, provided access to medications. The Denver Principles declared a series of rights for people living with the virus, including not being treated as victims and equal participation in the fight against HIV/AIDS. Many of us were transformed as we began a lifelong fight for survival against stigma and oppression.
Yet, despite these contributions, and even as mortality began to improve, the impact of this tragedy on those who lived through it was irreversible. These men and women, the long-term survivors, continue to be plagued by a host of concerns, including depression, anxiety, post-traumatic stress disorder, addictions and, for some, a deeply internalized sense of shame and even worthlessness.
Long-term survivors are diverse. Some, like me, date from the pre-protease inhibitor era when our T-cells dropped to four or five. After 1996, with the introduction of protease inhibitors, people living with HIV/AIDS (PLWHA) had a different experience, characterized less by certain death than increased risk for isolation and depression. Others, such as women, communities of color, and the trans community, have all had a unique experience of HIV shaped by stigma and other psychosocial issues.
Remarkable medical advances have altered the course of the epidemic and changed its focus to one of healthy living, a narrative that unfortunately overlooks the experiences of many long-term survivors living with HIV/AIDS. This lack of acknowledgment in stories about HIV/AIDS only further contributes to social isolation and unmet psychosocial needs.
HIV suddenly became very personal for me when I was diagnosed in 1988. A terrible case of shingles, followed by an HIV test and labs, confirmed that my immune system had significantly deteriorated. I began taking the only treatment, AZT (ritonavir), every six hours as prescribed. Because there were no other options and no history by which doctors could dose this medication, by taking it I entered into a human drug trial in real time. Unfortunately, AZT created such dangerous anemia that I was hospitalized for transfusions.
Over the ensuing years I lent my body to numerous other drug trials in a desperate attempt to stay alive, some of which also proved so toxic that I was twice hospitalized with pancreatitis and I still suffer crippling neuropathy. Fearful that my employer would discover my status, I received pentamidine treatments (to prevent PCP) anonymously at a public clinic and helped bring unavailable drugs into the country.
In 1994, when I was hospitalized for non-Hodgkin’s lymphoma, my family was assembled to be present for my death, but I somehow survived. Financial hardship followed when my health insurance failed to cover all the costs of the hospitalization, forcing me to declare bankruptcy. For years I focused on simply surviving until the next medication was released. Twenty years into the epidemic, many, including my then-partner of 22 years, began developing resistance and ran out of medication options. Like many others, he died.
My history is not unique. I share this journey with thousands of other men and women who, starting in the early days of the epidemic, had a very different experience than someone diagnosed with HIV today. For us, even an undetectable viral load cannot reassure our worry about the cumulative toll of the drugs and the virus on our minds and bodies, especially as we age. The psychosocial concerns listed have a significant impact on health and well-being (see "Psychosocial Complications”).
HIV has become a manageable illness, and today we can even speak of a cure. While I am truly grateful that we are conquering this epidemic, it saddens me that the devastation to my generation increasingly seems to be lost to so many, including a portion of the younger HIV workforce. And although this history is being documented on film and through our sharing, it falls to us alone to rewrite the narrative of our lives with HIV. We are still here. We survived, but we are doing much more. We are using resilience to transform our lives, thereby healing us and influencing those that follow.
Beliefs About Self
An HIV diagnosis is a blow to our identity and beliefs about who we are. “I am damaged goods.” “I am unlovable.” “I am unworthy.” Fueled by shame and stigma, these beliefs resonate with those resulting from other stigmatized identities such as being gay, from an ethnic or racial group, or an addict. There are ample messages from the world reminding someone living with HIV that they are dirty, worthless, even dangerous. These words become deeply internalized and create a jumble of worries about a foreshortened future, rejection, isolation, even criminalization. Such negative self-talk must be identified and corrected. This requires both persistence and support from peers along with healthy role models to eradicate these shame-based beliefs about oneself.
Most, if not all, people living with HIV/AIDS have experienced trauma and/or abuse in some form: emotional, physical, sexual, intellectual, and even spiritual. Trauma not only results from an HIV diagnosis, but a history of trauma can put someone at risk for becoming HIV-positive by creating feelings of low self-worth that lead to high-risk sexual behavior or deadening painful emotions through substance use. No matter the source, trauma leads to a variety of symptoms that are disruptive to a healthy emotional life. These include hypervigilance, isolation, emotional numbing, trust and intimacy issues, and even survivor guilt. There are various therapeutic interventions that can help individuals heal from traumatic experiences, and trauma-informed care has now become an important standard for recognizing its far-reaching impact.
MENTAL HEALTH ISSUES
People living with HIV/AIDS (PLWHA) have a significantly increased risk for mental health concerns. In any given year, nearly 50% of PLWHA meet the criteria for a depressive mood disorder, up to 40% can be diagnosed with anxiety, and many others are diagnosed with post-traumatic stress disorder (PTSD) or suicidal ideation. Psychotherapy, sometimes combined with medication, can be very effective for these conditions. Anyone experiencing such symptoms should seek out providers familiar with both HIV medications and the emotional concerns of long-term survivors. HIV-related dementia was once a very serious problem in the early days of the epidemic. Fortunately, rates of dementia have greatly decreased with newer medications but today nearly half of long-term survivors are estimated to experience HIV-associated neurocognitive disorders (HAND). Symptoms can include confusion, forgetfulness, and behavioral changes which are indistinguishable from symptoms related to the aging process. For now, the best intervention for HAND is to keep one’s viral load at undetectable.
PLWHA are at greatly increased risk for some form of addiction. Injection drug use (IDU) accounts for about 8% of new cases of HIV, and with the opioid epidemic there are concerns this number will increase. Many PLWHA find that certain substances and behaviors numb uncomfortable emotions and alleviate inhibitions and shame. While use of any substance can become problematic, methamphetamine is a particularly destructive drug reaching epidemic levels. Many long-term survivors who feel isolated, “invisible,” or less sexual succumb to the artificial boost to self-esteem provided by meth, resulting in high-risk sexual behavior. This euphoria is short-lived, however, and creates both physical and emotional havoc. In addition to all its other destructive potential, addiction often leads to non-adherence to HIV medications. Treatment, along with self-help recovery groups such as Alcoholics Anonymous, Narcotics Anonymous, and facilitated groups such as SMART Recovery are effective for addiction.
Because of psychosocial challenges it is essential to create resilience in order to maintain emotional health. Such resilience is not a personality trait, but rather a process unfolding over time. It is comprised of numerous decisions and beliefs about oneself, all of which reflect empowerment, social connection, and compassion for oneself and others. Here are some skills to build emotional resilience.
LIVE WITH INTENTION
A key foundation of emotional resilience is making the decision to live intentionally. Careers, families, and the future imagined by every long-term survivor were disrupted at an early age. Most of us had a sense of a foreshortened future and learned to live day-to-day, not believing we would survive. Consequently, many lost a sense of purpose. Today we know that discovering meaning for one’s life is tremendously healing. Working in some aspect of the HIV/AIDS epidemic provides the perfect opportunity for many, transforming their experience into action that contributes to both themselves and their community.
Shame and stigma undermine the lives of everyone living with HIV/AIDS. Finding compassion for oneself, including changing negative core beliefs, is tremendously healing. Mindfulness, the process of noticing one’s thoughts in a non-judgmental way, is useful for becoming aware of undermining beliefs and patterns and provides an opportunity for change. Finding trusted persons who can reflect back how they see us provides a wonderful opportunity to correct a distorted self-image and replace shame with affirmation and pride.
Learning to care for oneself physically, emotionally, mentally, and spiritually is essential to counteract psychosocial stressors. Eating well, getting adequate sleep, and daily exercise can sometimes be a challenge for PLWHA, yet being mindful of these daily aspects of living carries tremendous benefit, especially as long-term survivors begin to experience metabolic syndrome (which includes diabetes), cardiovascular problems, and liver and kidney complications. Such self-care also includes addressing any addictions, which only compound health problems.
Isolation, stigma, and physical concerns all contribute to social withdrawal, and each can lead to poor health outcomes. Perhaps the single most important component of emotional resilience for long-term survivors is social connection.
Getting together with friends, support groups, and social outings are all ways to create healthy social connections. Buddy programs, common in the early days of the epidemic, are very effective at preventing someone from sinking too far into isolation. Opportunities to interact with others who have had similar life experiences, such as The Reunion Project or Let’s Kick ASS (AIDS Survivor Syndrome), transform the impact of living with an uncertain future, multiple losses of partners and friends, and the prospect of rapid aging into one of empowerment and connectedness.
David Fawcett PhD, LCSW, was diagnosed with HIV in 1988, and has worked with HIV and co-occurring mental health and addiction concerns among men and women for over 25 years. Along with his clinical practice and workshops, he writes for TheBody.com and is an advisor for the SAMHSA-funded HIV/AIDS and Mental Health Training & Resource Center. His book, Lust, Men, and Meth: A Gay Man’s Guide to Sex and Recovery (Healing Path Press 2015) explores the intersection of drug use and high-risk sexual behavior.