This month, Compass, the LGBT community center in Lake Worth, and the HIV Long Term Survivor Network wrapped up a two-part discussion series shedding light on survivors’ experiences with HIV/AIDS.
Its most recent installment, “It’s Not Over Yet: Long Term Survivors of HIV and AIDS” featured a panel of case managers, survivors, and mental health experts. Throughout the night, the panel fielded questions and listened to attendees’ own struggles living with the virus.
“We want to be together to share, cry, laugh, and fight back,” said Chris Lacharite, HIV program manager at the Metropolitan Community Church. “We need to go back to the basics — the basics [being] when we were each other’s keepers. We need to do the work for younger survivors.”
In addition to Lacharite, Compass licensed mental health counselor Jacquelyn Jamason and former case manager and long-term survivor Carlton Rounds also sat on the panel.
Several attendees described their emotional struggles that developed as a result of living with the disease for so long. Lacharite said that he still lives with survivor’s guilt.
“Survivors suffer disproportionately from depression, anxiety, and PTSD,” he said. After “living through the horrors of the 80s and 90s … after death after death after death, there’s rage and sorrow that piles on top of each other and there’s nowhere for it to go.”
Other attendees and survivors expressed the same sentiment. Hector Bernardino, a 50-year-old long-term survivor and Palm Beach County resident, said he went through something very similar from living with the virus.
“What I thought was normal was actually anxiety and depression,” he said.
Jamason, at Compass and in her practice, has worked with several survivors. And many of them struggle with what she said was “deep, internalized shame” that results from stigma.
One of her survivor patients, she said, “hasn’t dated anyone in 20 years; hasn’t told anyone in her family. It was by no fault of her own — the trauma of finding out that you’re positive, then doing labwork and dealing with side effects and medication … there’s this whole new stigma.”
Compass held this discussion on HIV Long-Term Survivors Awareness Day on June 5. For the first time, SFGN previously reported, “nearly half of all people living with HIV in the U.S. are over 50 years old” as of 2019.
The panel also gave great attention to improvements that could be made in the case management industry, which is made up of social workers.
Compass Director of Health Services Neka MacKay, also a panelist, believes there’s a “catch-22” when it comes to case management.
“It doesn’t come with the medical education it deserves. I also don’t think we need more medical education, it comes down to passionate case management,” MacKay said. “We’re social workers, and that means we’re really invested.
Earlier in the month, Compass hosted the first part of their series, which was a seminar on HIV and aging, also in partnership with Lacharite and the HIV Long Term Survivor Network. The presenters and panelists also shared local resources like the Palm Beach County HIV Care Council, which is located in West Palm Beach.
“Palm Beach County has the chance to be out in front in meeting the needs of long-term survivors,” Lacharite said.