Finding an HIV Support Group Online

The benefits of networking with other people with HIV, and tips to protect your privacy online.

One of the greatest health breakthroughs of recent decades is that HIV has become a manageable condition. Effective treatments for this chronic viral infection allow people to enjoy long lifespans and a high quality of life.

However, living with HIV still comes with a number of challenges. There are the challenges of staying on medication and taking care of your overall health. There are the challenges of navigating health insurance and paying for treatment. There are the social challenges of sharing your diagnosis with others and dealing with the stigma around HIV that still persists. There are the challenges to emotional wellbeing and mental health that put people with HIV at risk for depression and other mood disorders.

It can be helpful to connect with people who have had similar experiences to your own. After all, no one truly understands what it is like living with a condition like HIV unless they too are living with it.

One way to connect with others who are living with HIV is to participate in a support group. Support groups are organized gatherings that provide a safe environment for people who are faced with a common challenge. They offer an opportunity to meet, speak, share, ask questions, listen, and offer encouragement to one another.

Some support groups meet in person, and are organized through hospitals, health centers, faith-based organizations, and other groups. There are also support groups that meet online, utilizing social media, forums, direct messaging, and video chat.

Some of the benefits of online support groups include:

  • You can join from anywhere. This is helpful if you live in a remote or rural area where in-person support groups are difficult to get to. It is also helpful for individuals who have transportation or mobility issues that make traveling difficult.
  • You can participate at any time, day or night. This can be helpful if you have a busy schedule, if your job requires shift work, or if you’re simply feeling lonely late at night. A forum or messaging app, especially one with people in different time zones, offers a chance to connect at any hour.
  • They offer a bit of anonymity. Meeting a group people in person can be intimidating, and might not be something you feel you are ready for. Joining a conversation online may be less intimidating.
  • Being part of any supportive community, online or in person, can make you feel less alone and help others feel less alone.

Any time you are using a website, app, or any other form of communication technology, it is important to take precautions to protect your privacy, your personal information, and any information you share. Some things to keep in mind:

  • Look for groups that are large in size and are actively used.
  • Vet the group before you share. Look at who organizes it, what their qualifications are, and what type of conversation is going on.
  • Don't give out personal information, such as your address or phone number.
  • Be suspicious of groups that advocate a quick cure, a particular treatment, or who try to convince you to stop your treatment.
  • Avoid groups that focus on negative comments or complaining.
  • Be mindful of how much time you spend online, and don’t let it keep you from your in-person social network.

Medically reviewed in July 2019


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