The gay experience has been defined for decades by the experience of ‘coming out of the closet.’ The closet was defined as not being out to yourself—dealing with the denial that you are attracted to people of the same sex. The closet was also defined by coming out to your family, friends, co-workers and publicly. Likewise, opening the closet door meant active participation in the gay community. Staying in the closet meant a lack of self-acceptance and living a secret life.

As a political strategy, coming out meant that people were empowered. It meant that as more people participated in action, community institutions could be built. But, most of all, it meant that gays and lesbians were not invisible. The theory is that the more people who know a person who is homosexual, the more accepting they will be. Integration and social interaction breed acceptance and ultimately, comfort.

Being HIV-positive—having a medical condition—is not exactly the same thing. One has a right to medical privacy and many people do not speak about their medical conditions. However, some diseases are different. It was taboo in the past to speak about having breast cancer. Nancy Reagan and Betty Ford spoke publicly about having breast cancer and it helped to lift the taboo. This in turn has led to more early diagnosis and treatment of breast cancer and with that has come more advocacy and more money for research.

AIDS advocacy taught breast cancer survivors a lot. The kind of advocacy that AIDS activists pioneered was revolutionary. In the ‘80s, HIV was a death sentence. Vital young men were fighting for their lives. They had busted out of their gay closet and now had very little choice but to reject the HIV closet. So many were sick and dying or terrified of whether they were next that it fired up a movement that changed the world.

Famous people such as Rock Hudson dying from AIDS and so many other families having someone that they had lost helped shed the light of day on AIDS. Of course, not everyone was open then. Death certificates were falsified so that AIDS was not listed. Many people died without ever being diagnosed. They went into the hospital and never came out. And many a funeral service ignored that the person died of AIDS.

Things are different today. A person diagnosed with HIV can live a healthy life on medication. No one has to know that they are HIV-positive. Most HIV-postive people are in the closet. The only problem is—they themselves know they are positive, and that is a heavy burden to carry alone. Telling their spouse or sex partners can be traumatic. They don’t want to worry their families. They don’t want to be judged for putting themselves at risk. Unfortunately, in this process of denial, shame and concealment, they lose a significant piece of their identity and their voice.

The AIDS movement needs the voices of people living with HIV. The silence that is now possible as a result of our success in treating HIV has silenced much of that voice. This past year, 10,000 people were on waiting lists or disqualified from getting lifesaving medication under the AIDS Drug Assistance Program in the U.S., and the response was pretty tame.

If you or someone you love is HIV-positive, consider carefully the therapeutic benefits of being open about your status and how you can make a contribution to the battle against AIDS.

president@aidshealth.org; aidshealth.org