As a disease characterized by high levels of stigmatization, finding people you can confide in safely will not only help normalize HIV in your life, but will help you overcome everyday challenges including treatment, prevention, relationships, and your general well-being.
At a time when digital interactions have become the social norm, online support groups offer one of the best ways to meet others living with HIV in a safe, open environment.
This community forum was founded by the publishers of POZ magazine in 2005. Because of the publication’s continual presence in the HIV community, POZ Community Forum continues to attract thousands of people looking for insights and advice about HIV testing, treatment, care, and prevention.
The POZ Community Forum boards are clearly laid out and monitored 24/7, so that abuses common in other forums (such as advertising and quack medicine) are avoided. The admins strongly encourage users to provide the full citation of any medical claims made, ideally with the website address so that members are not led astray.
Registered users can post three free messages per day. If you desire more interaction, you can purchase a seven-day subscription for around $10, a 30-day subscription for about $15, or a 90-day subscription for approximately $25 by PayPal.
When registered, you can opt to receive or send private messages. If you’re interested in meeting and dating others with HIV, POZ offers a separate dating site.
The Well Project is a nonprofit organization dedicated to the needs of women and girls living with HIV. The organization aims to increase health literacy and peer-to-peer support through community boards, forums, and other features to registered members for free. Users can opt to either create a profile page (with a photo and personal details) or remain anonymous.
In addition to posting comments on boards and blogs, members can join public groups, request access to private ones, or start an open or closed community of their own. There is also a group and a one-on-one chat feature.
Additionally, the Well Project maintains two blogs: the English-language A Girl Like Me and the Spanish-language Una Chica Como Yo.
This is why organizations like THRIVE SS, founded by three Black men in 2015, remain vital to this underserved population. Since its founding, THRIVE SS has grown from 45 men in Atlanta, Georgia, to over 3,500 in local chapters throughout U.S.
The organization’s programs are mainly focused on live support groups—including BYOB brunches and potlucks organized by local chapters—there are also online peer support events and live-streamed webinars for those unable to attend in-person events.
Central to the THRIVE SS support model is something it calls “Judy Support,” a term used to describe cultural self-acceptance and the rejection of homophobia and racism.
THRIVE SS is free, but it asks members to donate if they can afford to do so.
One Facebook community that’s been able to sustain momentum for more than seven years is Poz Place. Founded in 2012 by Brittany Cameron, an HIV-positive mother and peer engagement specialist, Poz Place offers a free, safe space for anyone in need of HIV support regardless of their sexual orientation, gender, or HIV status.
As a private Facebook group, Poz Place requires registration and an agreement to adhere to community rules. This not only ensures confidentiality but provides users with an open, honest, and non-judgmental environment.
With more than 5,800 registered members, Poz Place is among the largest private support groups on Facebook. As a member, you can expect to see anywhere from five to 10 posts per day and a quick reply to any questions you may have about HIV.
While the primary goal of TherapyTribe is to connect users to licensed therapists and counselors, there is a members-only forum that allows users to post comments or reply to questions and/or concerns from others in the community.
The HIV/AIDS portal has more than 11,000 registered users who offer words of support or encouragement whenever times get rough. And that’s no small thing.
You can also send and receive messages from your mobile device, create a circle of friends among registered users, and even start a blog to share with your social network.
Addressing the barriers to treatment and care in young people with HIV is different from those in older adults. Not only do attitudes and social pressures differ, but so do the ways in which younger people communicate. Positive Peers, a private support app, is designed specifically for teens and young adults living with HIV.
This 24/7 support system delivers all of the features mobile users demand: community forums, private chats, group chats, health and wellness blogs from other young people with HIV, medication refill reminders, an appointment calendar with automated reminders, as well as blood test charts to record, track, and share your results. There also are meditation videos to help reduce stress and a crisis hotline for those in need of one-on-one support.
Positive Peers is free, but it’s only available for people between the ages of 13 and 34. To get the app, you must first provide a scanned copy of valid ID (such as a driver’s license, passport, or birth certificate) and confirmation of your diagnosis (such as an HIV test, a copy of your viral load and CD4 count, or a signed release from your doctor).
The myHIVteam app asks registrants to provide details about their diagnosis (including current symptoms and the date of the initial diagnosis) along with a list of medications and side effects.
This allows users to connect with others taking the same drugs or experiencing the same health concerns. You can also filter members by lab results, symptoms, or side effects (such as nausea, lipodystrophy, or neuropathy).
In addition, the myHIVteam app allows you to build teams, post updates about yourself, and send and receive private or group messages. Because people on myHIVTeam tend to be more open about the status, the response is often more helpful and detailed than you might find on a community board.
While many people will turn to in-person HIV support groups, LGBTQ+ community centers, and public health clinics are great resources.
Moreover, many online groups—including those on Facebook—are designed for people of specific ages or cultural identities, providing them the means to communicate in the “same language.”
Choosing the group that’s right for you depends on your individual needs. It may be that you are struggling to cope, are seeking advice or education, or simply desire a sense of community among others like you. There is not a one-size-fits-all solution for everyone.
