How to Help Long-Term HIV Survivors Embrace an Unanticipated Life

I never expected to have AIDS, let alone to survive. I got sober in my 20s and could count my sexual partners on one hand. When diagnosed in 1988, at age 34, I had been out as a gay man less than a decade, was years into my first significant relationship and was quickly progressing in my career. Out of the blue, that first opportunistic infection began an endless series of precarious conditions that, almost overnight, wrenched my life into a non-stop struggle for survival. After countless hospitalizations, coming close to death with non-Hodgkin's lymphoma and losing more friends than I could count, a dark sense of hopelessness and inevitable doom settled in that was validated by everything around me. I spent my 30s and 40s preparing to die, having little energy to feel loss, sadness and anger.

Against all odds, I survived, and now, 30 years after that first infection, I have tried to integrate my experiences with HIV into my work with psychotherapy clients. So many of us from the darker days of the epidemic who were lucky enough to physically survive still struggle to live a fully restored emotional life. Many question why we are here and grapple with finding meaning in our experience, and this distress expresses itself in a number of ways: There may be too much risky sex, numbing with addictive substances or simply withdrawing and living in isolation.

As health care professionals, we can help long-term survivors embrace a life they never expected to live with a conscious awareness and acknowledgment of their life experience. The following client skills are helpful in this regard, are appropriate in any clinical setting and can be supported by any health care discipline.

Deepen Empathy for Self and Others

A diagnosis of HIV, even today, generates tremendous feelings of fear, shame and internalized stigma. As a survivor, every "UB2" in an online profile, use of the word "clean" or implied or actual act of stigma and discrimination still makes me wince. Each one is an assault that erodes self-worth and safety. In response, our defenses cause us to withdraw, isolate and avoid, and unless it is consciously strengthened, our sense of well-being will erode from both external judgments and the internalized critic.

To deepen empathy, I have found it useful to help clients restore a sense of compassion for themselves and their experience. This begins with the clinician encouraging self-reflection by the client, through which they can unearth any underlying negative core beliefs they hold (a nearly universal one for HIV is "I am damaged goods") that must be modified to heal this relentless form of self-sabotage. These beliefs might not be conscious, and changing them requires patience and the client's willingness to face deep fears. Newer, more affirming beliefs (such as "I am worthy of love") might at first seem unrealistic to clients, but with practice and nurturing, positive beliefs will take hold and help them rewrite their relationship with themselves and others.

Grieve and Release

The vast well of sadness held by those affected by the early days of the epidemic is still largely unacknowledged, even by survivors. As with other forms of trauma, many are reluctant to openly discuss their experience. However, when given a safe opportunity to do so, the extent of those wounds is revealed. I have been in workshops for long-term survivors where, once safety was established, the intensity of the grief that poured forth overwhelmed everyone present.

Beyond any specific clinical skill, I believe it is important for clinicians to act as a witness and listener, inviting clients to share their experiences and feelings. Our impulse as healers is to intervene or search for a solution, and there is a time for that, but simply listening is the first step toward healing this grief. Once a safe bond is established, other forms of clinical interventions such as trauma-informed therapy are useful to help clients resolve complex grief and process overwhelming emotional memories.

Work to Overcome Shame

Shame is a universal human condition, but I have found that the social construction of HIV has relentlessly intensified the experience of shame among those living with the virus. Stigma, discrimination and rejection all contribute to a belief that there is "something wrong with me." Grounding techniques such as conscious breathing or visualization are useful to help clients manage the sympathetic (fight or flight) or parasympathetic (numbing) shock that can result from an external or internal triggers of shame.

It is important for clinicians to be aware of their own thoughts and feelings since clients are highly sensitive to even the most subtle judgmental tone or gesture. In addition to clinical intervention, peer support is especially useful, and social connection in the form of activities, support groups and even casual interaction form the context in which the healing of shame can occur.

Live Consciously

Many persons living with HIV struggle to identify and control harmful patterns of behavior. I have found that gay men in their 40s, 50s and 60s who are long-term survivors have significantly higher risk for depression, suicide and substance misuse, especially crystal meth. The drug numbs feelings of being less social, less attractive and generally less energetic. Other long-term survivors may act out in a variety of other ways, including multiple addictions and sexual compulsivity.

Meditation is an important tool for self-awareness, but I have found that many clients overcomplicate it, become overwhelmed and give up. Most find it easier to utilize mindfulness, the act of simply noticing without judgment what is happening in the present moment. Long-held patterns, such as situational reactions or somatic symptoms linked to beliefs, can be observed by the client and therefore changed. Many long-term survivors believe the trajectory of their life is one of inevitable sadness or missed opportunity. In such cases, mindfulness can help people observe their both their feelings and their patterns of behavior, providing an avenue to validate and release uncomfortable emotions and opening opportunities for healing and growth.

Find Your Purpose

Like mine, the lives of all long-term survivors were dramatically interrupted. Despite surviving, we experienced a protracted awareness of impending death, loss of friends and partners, life-threatening chronic illness and a foreshortened future that caused many of us to jettison everything from life plans to retirement accounts. In the '80s and '90s, a diagnosis of HIV almost inevitably led to disability, resulting in lost careers and a lifetime of financial hardship. Many of us also struggled to identify why we had been spared and how we could shape our lives to honor those who did not survive.

Finding meaning in one's life provides a solution to such emotionally burdened existential concerns and is critical for both emotional and physical health. While many long-term survivors initially struggle to find any sense of purpose, a significant number ultimately rediscover incredibly meaningful work within the HIV community. Helping survivors make sense of what they have experienced, and even become grateful for it, is a powerful force for healing.

Those living with HIV, especially long-term survivors, experienced lives disrupted in countless ways. With newer medications comes physical survival, but not necessarily psychological thriving. These skills are beginning steps toward helping our clients embrace an unanticipated life.