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Chicagoan helps put AIDS Survivors Syndrome in the spotlight
by Matt Simonette
2019-07-24

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Among the many effects of the AIDS crisis are the constellation of residual mental-health issues that can face individuals who cared for or lived with someone facing AIDS, or otherwise experienced the crisis on its proverbial front lines.

Those issues—frequently grouped together under the label AIDS Survivors Syndrome—include forms of survivors' guilt and depression, among other symptoms. Until recently few professionals knew much about how they have affected persons left behind in the AIDS crisis. Chicagoan Joseph Knell, however, has recently formed a new discussion group at Center on Addison so area residents can gather to talk about those issues.

AIDS Survivors Syndrome is a complex form of PTSD, Knell noted, adding, "It's similar to what soldiers in World War I experienced. ... Nine of the symptoms have been validated in the MACS [Multicenter AIDS Cohort Study] study."

Knell recalled that, when doing research on HIV case management for his job in December 2018, he chanced upon writings by Tez Anderson, a San Francisco-based activist who has widely discussed AIDS Survivors Syndrome; Anderson himself coined the term in 2013.

"[Anderson] was experiencing different symptoms like depression, lack of future orientation, irritability—there's a whole list of symptoms [now] identified with AIDS Survivors Syndrome," Knell explained.

In reading Anderson's book, however, Knell recognized a lot of those same symptoms in himself.

"Now I understand while I felt so bad for so many years," Knell said. " … The MACS was with both HIV-positive and -negative people. What they found was that it didn't matter whether you were positive or negative; what mattered was that you lived through the epidemic."

Knell long battled depression. He said it got worse with the 2016 Pulse nightclub shooting in Orlando.

"After that, I started having these [episodes] where, out of the blue, I would just feel incredibly sad—one of the symptoms is extreme sadness," he said. "Another symptom is social withdrawal and isolation, and there were times when I just felt like staying home. A lot of the issue is this feeling that nobody else can understand what I went through. Until you've sat with your best friend and watched them die, you won't understand what it's like."

Knell had multiple friends with AIDS over the years.

"There were friends whom I was with in the hospital and there were friends who didn't want anyone to see them, and we just found out about it," he recalled. "That can be just as bad because you weren't there for them."

Knell contended with survivors' guilt as well.

"Sometimes I feel guilty that I'm still here," he explained. "I was doing the same thing my best friend was doing. We were all experiencing our lives and having fun. Why am I still here 24 or 25 years later, and he's not? A lot of those things just come up."

Those issues came to a head in 2018.

"I was feeling really bad," Knell recalled. "I was having really dark thoughts and feeling depressed. But I at least worked for a great company and had good heath insurance, and could go talk to somebody about this."

Going into therapy was useful, but his therapist did not know the intricacies of AIDS Survivors Syndrome. Reading about it in December 2018 was revelatory, however.

"I had been in support groups for grief and things like that," Knell said. "My first thought was, 'Now I know what's wrong. Now I know why I've felt this way for 20 years. If I'm feeling this way—there are lot of gay men who lost people during that time, people who are HIV-positive and -negative, lesbians who were on the front lines helping out, family members, straight people—there are other people feeling the same thing.'"

Knell emphasized that a group most at risk for completing suicide are men in their fifties.

His discussion group has become a personal mission.

"It's real and this is affecting people," he added. "People are out there and suffering, and they don't know what's wrong. I worked in health care—I even worked in psychiatry for a while—and I didn't know what's going on. That's the real challenge—people aren't aware."

The AIDS Survivors Syndrome Support Group meets Saturdays from 12:30-2 p.m. at Center on Addison, 808 W. Addison St. For more info, see www.centeronhalsted.org .


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