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Articles tagged with: personal stories of people living with HIV

Jan31

Kicking ASS (AIDS Survivor Syndrome - or Lazarus Syndrome)

Saturday, 31 January 2015 Written by // David Phillips Categories // Aging, Gay Men, Health, Living with HIV, Opinion Pieces, Population Specific , David Phillips

David Phillips says “Medically, we would be just fine, but mentally we were still feeling the aftershocks of being given a death sentence and having it taken back.”

Kicking ASS (AIDS Survivor Syndrome - or Lazarus Syndrome)

It seems that for much of my adult life I have pushed back hard for long periods of time against ‘opportunities’ and ‘invitations’ extended to me, only to be drawn back by a compelling force like matter into a celestial black hole. The pull could be just as terrifying if I didn’t keep my focus on objects and people close at-hand. 

This is just how I have felt over the last four years on the slow and steady pursuit of a degree in public health.  Sure, I’m the “HIV dinosaur,” but that only makes researching anything HIV-related feel “easy” or de rigeur. Nonetheless, recent developments, raging self-interest, and frustration have led me to investigate what’s currently being called “AIDS Survivor Syndrome.” 

i say “currently” because it’s quite apparent from hundreds of academic publications and my own memory that since the introduction of AZT we’ve known of unique, traumatic experiences affecting many people living with HIV since that era or before.  First, we learned that we had a heavily stigmatized, almost certainly fatal disease.  Then, we were told that we were going to live - at first, it was an indefinite number of additional months, later years; and now it’s essentially a “full lifetime.” Medically, we would be just fine, but mentally we were still feeling the aftershocks of being given a death sentence and having it taken back. 

When Jesus had said this, he cried with a loud voice, “Lazarus, come out!” The dead man came out, his hands and feet bound with strips of cloth, and his face wrapped in a cloth. Jesus said to them, “Unbind him, and let him go.” (John 11:43-44, New Revised Standard Version Bible) 

I can still hear the late Rev. Larry Uhrig of the Metropolitan Community Church of Washington, D.C., during his fight with HIV, reading another translation of the story that earlier includes the words “Lord, by this time he stinketh: for he hath been dead four days.” 

After protease inhibitors appeared, the phenomenon became more apparent, even to mainstream media and society at-large. The term “Lazarussyndrome” was applied, as if to suggest yet another diagnosis; however, it seems that little effort was made to find a treatment, much less a cure. Many regained vitality and returned to relationships and careers, while others struggled under the continued physical, mental, and economic challenges of disability. Virtually all were changed psychologically, if not scarred. Resources for psychosocial support began to evaporate, though, as HIV-related deaths declined, and for many the lure of meth wasn’t far behind. 

Now, having outlived life partners and having survived barbaric early antiretroviral regimens and the destruction of substance abuse, some HIV long-term survivors are bringing attention to the wounds of old and repeated trauma that did not heal, despite suppressed viral loads and amazingly recovered CD4 measures.

Tez Anderson and his co-conspirators in the San Francisco area  raised the banner of Let'sKickASS (AIDSSurvivorSyndrome) in an era of exciting developments regarding HIV treatment and prevention, to declare that we are not all completely healed from two to three decades of loss and physical suffering, and that we continue to suffer with specific mental health burdens, some of which may be shared by HIV-negative people who witnessed HIV’s early toll of sickness and death.  Others like me are bringing the same message to our local communities, challenging HIV long-term survivors, particularly Gay and Bisexual men, to speak up and organize for their own healing, while inviting supportive organizations to explore how they can help us kick ASS. 

I am also exploring the topic with a variety of researchers, including a local psychologist who sees among her HIV long-term survivor patients disproportionate cases of depression that does not respond to medication coupled with symptoms of post-traumatic stress. She wants to study treating these individuals using successful therapies adopted for PTSD. I am helping her to build the case through personal narratives and past studies -- it’s hard for a mental health outsider to imagine that there would be resistance!--that a pre-HAART HIV diagnosis (and even a current-day diagnosis) or seeing dozens upon dozens of friends suffer and die from HIV qualifies as a initial traumatic event. 

Straight women not living with HIV can kick ASS, too!

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