HIV support groups: what are they, and should I join one?

By: Jennifer McMillen Smith, MSSA, LISW-S, Division of Infectious Disease and medically reviewed by Ann Avery, Infectious Disease Physician at Metrohealth Medical Center

Even if you are already getting support from friends or family, having even more help is never a bad thing 😊. So, what about support groups? Can they actually be helpful for those living with HIV, and where do you even start?

Let’s talk about the benefits, and if a support group is right for you.

A helping voice

HIV support groups are, basically, people coming together to help each other. It’s a place to get advice and comfort.

The best thing is getting to talk to people that get what you’re feeling and have real advice on how to feel better.

Here are just a few of the pros of joining:
• You’ll realize you’re not alone
• You’ll have the chance to learn from your peers
• You can help others that are going through the same struggles!

And having people around who care and really understand what you’re going through can be really helpful, medically speaking. According to a study by NIH (National Institutes of Health), support groups help with reducing illness, improving chronic infections (such as HIV), and offering a better quality of life 💪🏾.

 

But which HIV support groups are right for me?

There are loads of different types of support groups, and there really is something for everyone.

There are female-only groups (note that anyone who identifies as female can attend!), groups open to any person living with HIV, yoga groups, Taco Tuesday groups 🌮🌮 just for young people, veteran-specific groups, knitting squads, groups for gamers 🎮… the list goes on. And some are available online!

Virtual support groups are great because you get to know people from the comfort of your own home. You can use avatars, nicknames and even leave the camera off until you feel comfortable to share more.

Here are a couple of online support groups you might be interested in:

  • POZ Community Forum: One of the biggest (and oldest) discussion boards for people living with HIV in the U.S. The boards are watched for abuse and accuracy, and you can post for free (to an extent).
  • The Well Project: A non-profit organization focusing on women and girls living with HIV. Users can choose to either make a profile page or stay anonymous.
  • THRIVE SS: Created by three Black men in 2015, THRIVE SS supports the Black community, who are the biggest HIV risk group in the U.S. THRIVE SS is free, but it also asks members to donate if they can afford to.
  • And our favorite…
    Positive Peers: Focusing on young people (roughly one in five new U.S. HIV infections happen in people under the age of 25), Positive Peers is a private support app. It’s built with input by people living with HIV, for people living with HIV, free, watched for abuse, and available to people between the ages of 13 and 34.

For a full list, head here!

 

At the end of the day, a support group is there to help you share your experiences safely. You may even find your confidence growing and become better at keeping up with medication. If that all sounds good, then read on!

Support is now everywhere

With loads of support groups now online, it’s easier than ever to talk to people going through similar challenges. It’s especially helpful for those of us who are shy about meeting others or live in remote areas and wouldn’t seek face-to-face support 💻.

 

For example, as an app, Positive Peers is a support group you can carry around in your pocket. Users use the chat feature most, so you can be in touch with your peers at the press of a button. It’s a great comfort to know that there’s someone just a few clicks 📱away that might be able to offer a few nuggets of wisdom.

You can learn more about how Positive Peers tackles social isolation, and you can register for the app here!

So, where do I sign up?

Most support groups ask you to register by creating an account. And most HIV support groups don’t cost anything – some ask for a donation, a couple have a monthly fee, but many are run by non-profits. (Positive Peers is FREE!)

Listen: at the end of the day, joining a support group can sound scary, or even unnecessary. And that’s fine! 😍 You need to do what works for you. If you’re on the fence, then maybe see if reading these stories from real people living with HIV who have joined support groups and have used the Positive Peers app. It might just be that their bravery in finding inspiration, hope, and support can somehow help you, too. If the answer is yes, then a support group might work for you, after all. 😉

Good luck! 🥰


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