Support When Newly Diagnosed with HIV

Few times in life can feel as lonely as receiving an HIV diagnosis. A first instinct, following the news, maybe to isolate or assume that you will never find or connect with others who understand. But this is far from the truth.

The good news is that support for this diagnosis can come from many sources—you are never limited to just family or friends.

To spark a conversation about the many ways of finding support when living with HIV, we reached out on the H-I-V.net Facebook page, asking, “When you were newly diagnosed, who did you receive the most support from?”

More than 100 of you responded. Here is what you shared.

Family support after diagnosis

More than a few of you shared that you were able to turn to one or both parents for support. Anytime we face something scary or difficult, it can be a huge relief to know that we can still return home to be taken care of.

Granted, not everyone has this kind of support from parents, which a few of you also acknowledged in your shares.

"My parents. I was extremely fortunate in that regard. They took me in without condition and with zero stigma. They relied on information from the Centers for Disease Control [and Prevention]. This was in June 1995."

Talking to friends who are living with HIV

Few people will understand the ordeal of living with HIV quite like someone else who is facing the same challenges. A couple of members of the community wrote in to say that they receive the most support from friends, new or old, who are also living with HIV.

Some of you reading this may not know other people in real life who also have HIV, which is where an online community can step in.

"I did tell one person only to find out years later that that person was also positive. We are some of the luckiest people. We have an unbreakable, unseen bound. Always look on the bright side of the street!"

Finding a safe space with my case manager

Several of you shared that your case manager has done much more for you than help coordinates doctor visits. Case managers can often be a port in the storm, offering a safe, nonjudgmental space for you to open up and feel accepted. As with any diagnosis, having emotional healing can be just as crucial to well-being as physical care.

"My case manager, because while I was in her office I could freely talk about living with HIV without her getting that look on her face. You all know the one, where they crinkle up their nose and still try to smile."

HIV-focused support groups

For a host of political and social reasons, HIV is a diagnosis that has really led to a rallying of grassroots support. In major cities and smaller ones, groups have sprouted up to address concerns and create community where it was often lacking.

One such group is the Southern Arizona AIDS Foundation in Tucson, offering counseling, case management, and help with housing, food, and other necessities.

"A place called S.A.A.F."

"My friends and fellow volunteers at the Stop AIDS Project; it was back in the 1980s when Planned Parenthood first began offering confidential testing."

Online support groups from the LGBTQ community

For some of you, whether because family did not understand or just was not available, you found support in communities, be they LGBT groups or online. So often, we may get stuck thinking that support can only come from friends or biological family, but the truth is that support can be found in many places. Moreover, family does not have to be limited to the one you were born into.

"The year was 1989 when I was diagnosed. Up until 2000, all of my support came from my family and the LGBTQ community.""I did not get support until 2013 when I joined the online groups and found a good support system."

"I meet new people here on Facebook."

We wish to say thank you to everyone who shared about this topic. It is our hope that your shares will help connect those newly diagnosed with help and support much sooner.

Are the partner to someone newly diagnosed with HIV? Get advice from those who know what positive support looks like, here.