Long Term Survivors

The long-term survivor (LTS) with HIV/AIDS has carried excess baggage of many types since being diagnosed with the infection. Long Term Survivors are defined as having a HIV/AIDS diagnosis before 1996. They share those earliest and darkest years of the epidemic when there were no effective treatments. Effective treatments were available in 1995-96. Protease inhibitors transformed HIV infection from a “death sentence” to a more chronic but manageable condition. They had planned to die like so many of their peers. Today they are socially isolated with the “ghosts and the guilt” of surviving while so many others died. Recent data from New York City estimates that 26% of all people living with HIV in Manhattan are HIV Long-Term Survivors. It is likely that that the estimated national percentage is about the same.

AIDS is more than the deadliest epidemic in human history. It continues to have, profound social and cultural meaning. It has long-term, broad-ranging effects on personal relationships, social institutions, and cultural configurations. The AIDS epidemic galvanized communities, often providing a sense of meaning and purpose. AIDS robbed young adults of youth and the years that lead to relationships and the rewards of working versus today’s poverty.

The LTS express feelings of abandonment and a sense of invisibility. They evidence high rates of depression as well as PTSD fueled by social isolation. Many decide to end their lives rather than face the health and social complexities and implications of aging with HIV. Characteristics of the LTS include:

  • Depression

  • Panic from Age
  • Suicidality
  • Sexual risk-taking
  • Self-destructive Behavior
  • Substance Abuse
  • Social Withdrawal & Isolation
  • Thoughts like Deep Regret and Shame
  • Survivor’s Guilt
  • Cognitive Impairment
  • Anxiety & Nervousness
  • Irritability or Flashes of Anger
  • Sleep Difficulty; Nightmares
  • Low Self-Esteem & Self-Worth
  • Self-Stigma

The good news is that because of resilience and the will to persist, LTS endures. The issues they confront as they age are significant. They likely experience an increased burden of disease as they develop higher frequencies of age-related chronic disorders. The psycho-social results of living with HIV for 20+ years are considerable. Addressing those issues – depression, anxiety, PTSD – and Multimorbidity – require professional and community support.

Like the older adult with HIV, the Long-Term Survivor needs to work closely with medical providers. They need to understand that addressing mental health issues must be given the highest priority, This resource site provides many of the guidelines for optimal engagement of aging with HIV. The resiliency which the LTS evidences needs to be understood and shared with others.

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