Happy Fourth Birthday to Facebook's HIV Long Term Survivors Group! Here's a Chat With Its Founder
June marked the fourth anniversary of Facebook's HIV Long Term Survivors community group. It's a lively, supportive, and diverse space where those who've lived with HIV since the pre-antiretroviral era (prior to 1996) -- and some of their fiercest loved ones and allies -- share thoughts, worries, support, leads, resources, and tips on everything from medication interactions to insurance and housing challenges to dealing with fatigue, pain, isolation, depression, and trauma. (There's also much celebration of life amid the hassles.)
For example, someone recently posted, "My husband and I were recently diagnosed with osteopenia and prescribed alendronate and calcium with Vitamin D. Has anyone else taken these, and were you able to function well the day after the once-a-week alendronate dose?" (At least a dozen folks answered with their own stories.)
Other posts are about memorials or melancholy anniversaries of loved ones lost. "On this sad day 34 years ago, the love of my life [name redacted] lost his battle with AIDS. He was one day shy of 30 years old. My life changed forever." Of the many responses, one person commented: "Sending my strength and gentle hugs to you, I've lost two husbands to this disease, the pain never goes away, it just lessens at times."
Or, on the happier side: "This year marks 30 years positive, I turned 56 last week. I expected to be gone many years ago. I am still here and going strong. I have never been happier, I am in love with an amazing man and getting married in August. Life is good."
The man behind the page is Jesus Heberto Guillen Solis, 59, a San Francisco–based longtime survivor (LTS) diagnosed with HIV in 1985, one year after coming to the U.S. from Mexico. Solis spoke to TheBody about what inspired the group, what's most satisfying and frustrating about it, and where he plans to take it next.
Tim Murphy: Hi, Jesus! Congrats on the fourth anniversary of the page. It's an incredible place where thousands of LTS from all over the U.S. and the world share experiences, wisdom, tips, and love.
Jesus Heberto Guillen Solis: Thank you! I still feel like there's so much more we can do.
TM: So tell us about yourself, Jesus. Who are you?
JHGS: Well, I'm 25 years old -- after five margaritas, that is. Haha. No, I was actually born in 1960 in a small town in Mexico, inland from the gulf, called San Antonio. We're known for our silver and our chocolate. I came to the U.S. in 1984. Not because I had to -- I had a government job in Mexico. But I knew I had so much more to learn and enjoy out there. So I came to LA and just didn't go back. I was fresh meat in the city! I hardly spoke English, but it wasn't scary. It was the disco times in LA.
TM: But did you arrive knowing that AIDS was happening?
JHGS: It was just the beginning of the epidemic -- a lot of rumors and gossip. When you're from another country, that's the last thing on your mind. You're trying to survive, eat. I was going to school at night, learning to speak English. My first job was at Jack-in-the-Box, getting up at four or five in the morning. But eventually I got a job with a nonprofit helping street kids. Then I started doing theater as an actor and singer and even managed to become an Equity [Actors' Equity Association] member.
TM: And then you were diagnosed with HIV only one year later?
JHGS: I was living with an aunt, and I had no other community. I hadn't been jumping from bed to bed, either. The lady was very cold. She said, "You have AIDS, you're gonna die." Mijo, I did the test five times, hoping it was a false positive, but it wasn't.
TM: Did you get sick?
JHGS: In my first 15 years of HIV, I didn't get sick or take meds. No meds until 2000. I just didn't think it was the right thing for me. But also, in 1990, I got an offer from a language instruction company for a job in San Francisco, and I moved there. The first night, I went to the Castro with one of my exes and saw naked people in the windows of their apartments. The police were passing by, but not caring. Everyone was having fun. I liked it a lot more than LA. I love walking, and in LA, if you walk, people think you're a thief, prostitute, or crazy.
So I started to get involved with the gay Latino people in San Francisco. First, I moved close to City College, then to the Castro. Now I live in a wonderful apartment in the Lower Haight. I am on disability, but sometimes I do advising for conferences. I also play guitar, compose music, and sing, both by myself and with groups. I was part of the Coro Hispano [Hispanic Choir]. I'm single, but I'm a romantic guy.
TM: How did you get the idea for the Facebook page?
JHGS: Without any pretensions, I'm one of the 10 people in San Francisco who's really active on the issue of LTS. About seven years ago, I attended an event when the wonderful organization ACRIA came to SF to talk about LTS, which got me Googling the topic. I didn't find much. So I started my own page on Facebook.
Sometimes you don't know what you're getting into! The group grew really fast, about 1,000 people in the first year, so obviously it was needed. The first year, I was doing it myself, and I cried a lot because people would call me in the middle of the night with their problems -- a lot of mental issues, loneliness, isolation. "I live in Nebraska and I'm losing my home." So many things I could not fix. And about 20% of LTS are constantly in the hospital.
And after the LTS documentary Last Men Standing came out in 2016, the membership jumped. We're close to 5,000 now, about 70% men and 30% women, about 65% white, 20% black, and then Latinx. Also about 3% young people who were born with HIV. I tried from the beginning to be really welcoming to all kinds of people, not just gay guys. We have a lot of very powerful women on the page.
TM: What topics come up the most?
JHGS: We have people constantly in the hospital, then about 60% of people are up and down, then about 10% are flourishing and looking gorgeous. But the commonality is mental issues -- depression, anxiety, and what I call "the anger factor." That's people who don't know how to deal with anger about their lives, an effect of being LTS, so they hate everyone and everything. We're like veterans from a war; we have survivor's guilt, PTSD. Sometimes if they get too hostile, we have to think of the well-being of the group and mute them for a few days, because we don't allow lashing out at people or hijacking threads. Thankfully, now I have four other administrators on the site to help me out.
TM: What are the most controversial threads?
JHGS: Every time Trump comes out with something, people get really on top of each other. We definitely have a few Republicans and Trump defenders on the page.
TM: The most useful?
JHGS: The ones dealing with isolation and loneliness. We think all HIV LTS live in big cities with lots of friends around. Not true. We have LTS in small towns, on islands, even in jails. We were able to stop three suicides last year, even though we're not therapists.
One of the cases I had to stop myself -- a lady overseas. I try to send almost everyone on the page a personal note occasionally, asking, "How's life?" So this one lady said, "I think I've had enough," and she told me she took a bunch of pills. I kept talking to her to keep her awake, but she was getting drowsy. She finally told me her husband's phone number, so I called him, and they found her and took her to the hospital. The woman is better now, but she still has depression.
Another person was in a small town in Ohio. We went to their page and contacted a friend of theirs to go check on them. It can be hard to distinguish between real danger and someone just having a really bad day, but when someone comments, "I've had enough of this life," we try to make an effort [to intervene].
TM: What post has moved you the most?
JHGS: We do allow some HIV-negative allies, like spouses and nurses, on the page if they can tell us why they want to be there. So this one guy said he wanted to be part of the page because his mother was HIV positive and he had no idea of how to understand or help her. So I let him join. Then the mother joined the group and said on the page how much she appreciated his efforts to understand her.
My own mother has lived with me the past few years. That's happening to many of us LTS, where we have our own issues but we're also caregivers for our parents.
TM: Do you have support in your life, Jesus?
JHGS: I don't have a best friend, but I have very good friends, including on the page. Oh my God, the support I have received when I've been in the hospital or going through something! I would do live video from the hospital and sing, "Hospital show, hospital show!" and then later, people told me they were glad I was out but they were missing the hospital show!
TM: How is your health now?
JHGS: I live with chronic pain, neuropathy, and haven't found something that really helps. I have just started doing CBD gummies and drops under my tongue, so we'll see if that helps.
TM: How has running the page impacted your life?
JHGS: I think of Spiderman. With great power comes great responsibility. That's good for the ego for 15 minutes, but the higher I go, the bigger that responsibility gets, and I feel I have to do better.
TM: So what direction are you going in next?
JHGS: I want to do an LTS version of the Make-A-Wish Foundation, where we help LTS realize a dream, like having a big dinner with all their friends. I want to put smiles on people's faces! I also want to get a therapist, lawyer, and social worker on the page to help us with more real answers. We are the first generation growing older with HIV.
TM: Have you thought of trying to have an actual meetup?
JHGS: It would be amazing to have a roomful of LTS, but it would require a lot of organization and money!