Creating community is a do-it-yourself project

I felt oddly alone waiting for the HIV community forum to start. This would be my first public gathering since my diagnosis. Prior to finding out about my status, I hadn’t realized that people didn’t talk much about stuff like this, so I longed for a new sense of community to ease the process. Yet I couldn’t quite figure out why, in a room full of positive people, I still struggled to connect.

Minutes later, two guys who appeared to be a couple, looked, in a way, like me: uneasy.

Then it clicked. These guys were around my age. Until their arrival, I hadn’t noticed that I was the youngest person in the room. At only 25, I was roughly a decade younger, at least, than most of the others there.

Most of those gathered were long-term HIV survivors who tested positive when AIDS was thought of as a death sentence. I tested positive when HIV amounted to something totally different. For many young people, AIDS and HIV is an issue of the past. But I was dealing with it in the present.

I couldn’t quite figure out how to introduce myself to these other younger guys. Striking up conversation on the basis of having a disease makes an awkward introduction. They left before I got a chance to say hi, but just seeing them there had already helped me feel better.

At the next forum they didn’t return, dashing my hopes of meeting other HIV-positive people my age.

It is estimated that one in five gay men in major cities have HIV, which is certainly not limited the long-term survivors. In Denver alone, there are hundreds of new HIV diagnoses each year. So where were my young, poz comrades? Perhaps discouraged, my generation seemed to miss the wisdom of showing up.

Eventually, one of the community leaders noticed my youth, as well as my persistence. Though he was more than 50 years old, he asked me to help start a new group geared towards HIV-positive people under 40. I took him up on his offer; with one other volunteer and a couple months of preparation, we created a new HIV social organization for people in their teens, 20s and 30s.

More people showed up to the first meeting than we had anticipated. I sensed an instant connection I’d struggled to find, and recognized faces and acquaintances. Though I hated to hear about my peers diagnoses, I was relieved some had been in the same shoes as I’d been in.

They existed after all – I wasn’t the only young person with HIV.

While the group gained community recognition and I reveled in its small success, there was also a backlash. Comments on message boards called the group “discriminatory.” Others mocked us, saying we believed that anyone over the age of 40 needed an AARP card. Some even threatened to make sure we failed. Clearly there was more to creating community than we had predicted.

We neglected to consider that creating an HIV community for young people would cause older crowds to feel left out. Our intention was never to reject or exclude anyone. While some critics may simply have been angry that they could not access a new group of people, others genuinely worried that something like this would be divisive.

But if young HIV-positive people hadn’t been showing at community events, then the HIV community was divided to begin with. Now, they had a place to go that didn’t feel quite as isolating. Our hope had been that more young people, given proper connections, would feel comfortable about their status and connect with others even beyond what we created – and it was working.

Not every group meets the needs of everyone it tries to serve. With thousands of poz people living in this city, a mere general HIV organization won’t reach everyone.

If you feel lost trying to fit into any community, it doesn’t mean those you seek don’t exist. Something new just may need to be organized. Regardless of inevitable criticism, the path to finding the camaraderie and resource you need is often to create it yourself.