We asked our social media followers. They answered—and even responded to each other's need for support
“My friends and coworkers are 100% supportive. With so many of us where I work living with HIV and our company culture is HIV-focused, we are there for each other. Also, I go to Positive Attitudes, a weekly support, discussion and educational group in the Ft. Lauderdale area.”
—Robert Hadley
“I’m one of the founding members of a Facebook group called Straight and Positive, for heterosexual men living with HIV. It’s a private group, so contact me to join. It’s been really great to connect and build something, bringing in so many stories and watching this group grow.”
—Derek Canas
“Sadly, my support system is not local. It seems like the only ones who have any type of support are the youth and the newly diagnosed. Here in southern Appalachia, support is hard to find. Long-term survivors and people over 50 are disregarded and ignored in this area.”
—Mark L Grantham
“There’s HAG: HIV & Aging group on Facebook, my family and congregation; I’ve been going to AA 12-step groups for over 30 years. I guess you could say that my life is one big support group.”
—Lillian Thiemann
“As a senior citizen and long-term survivor of AIDS, stroke, heart attack and ensuing kidney failure, I have no one. I have recently relocated to be near my hospital and doctors. It’s self-care and good planning, as all my friends are dead. My biological family has never been helpful. I have a cat.”
—@Robnda216
@Robnda216: “Hey, Rob. Long-time warrior here, too. I am also diabetic, have afib and live with degenerative arthritis. Always around to listen and help.”
—@mcinnis
“I’ve been living with HIV for nearly 40 years. My best friend is a doctor. I have a network of older Black friends, some of them are also living with HIV, some of them aren’t. We are all long-term survivors. We support each other on all fronts.”
—@iamphillwilson
“My support network is a close group of other long-term survivors from across the country. No one ‘gets it’ like other survivors, with whom we can talk on Zoom in a shorthand for which no explanations are necessary.”
—Bruce Ward
“I have my Thriving at 50 & Beyond group—we discuss challenges, successes and new medications, including injectables. I also seek professional speakers to speak on HIV and aging, diabetes, gastrointestinal issues, heart, bone loss, mental health, stigma and isolation. We meet at a park to have our discussions.”
—Lillibeth Gonzalez
“I have been living with HIV for over 30 years. My support group includes my kids, my grandkids, my ex-wife, my parents before they passed and my good friends. Everyone who is in my life has always supported me and helped me out. When I first found out I was positive, I sent an email to everyone I knew, telling them what was going on in my life. Nobody stepped away. I just love them all, and I do not know how I could’ve gotten through all of this without them.”
—Tracey Kelly
“I have @network_alive as my support group.”
—@BukenyaSimonPe8
“I’ve moved to the middle of nowhere Tennessee with a friend so I can better my mental health. What I’m realizing I sacrificed was comprehensive HIV care and a support network.”
—@Ryanknowsbest
@Ryansknowsbest: “Hey Ryan! I’m sorry to hear that… it’s wild how different services are depending on where you live.”
—@shawndecker
@ShawnDecker: “It’s an hour to Nashville to get help. No transportation that I know of. No local help to access meds. I’m due for Cabenuva at the end of August and have no access to get it outside of market price through a local doctor.”
—@Ryanknowsbest
“I live in Washington, D.C. with my seronegative husband who loves me, with insurance that keeps the medicines coming and allows me to see HIV-aware and gay-affirming doctors close by. Yet I need to connect more with other people who are living with HIV. I used to have more HIV friends when I was less healthy.”
—@LivingPlusly
“I have @rrpplus, a network of people living with HIV in Rwanda.”
—@CharleneJourney
“I wish there was a professional support group for us, especially for newly diagnosed people. I was totally lost in the beginning of my journey.”
—Rodge @RodgeLifePlus
“There are no support groups in my area.”
—James Soto