By Jordana Rutigliano
“It’s part of life…some people get it, and some don’t. But we still live. It’s not who we are,” says Lydia, a 44 year old Hispanic woman. The rest of the group nods and mumbles in agreement. I have asked the group attending today’s Consumer Advisory Council (CAC) meeting to share their thoughts and experiences with HIV/AIDS over the past few decades as we acknowledge this year as the 30th anniversary of the HIV/AIDS epidemic. Lydia’s sentiment – that those with HIV/AIDS do not have to be defined by it – represents how far treatment and society have come during the past three decades. For many, what was once a “death sentence” diagnosis with a tremendous stigma can now be managed like many other illnesses. Lydia recalls her feelings sixteen years ago when she was first diagnosed: “Back then it took two weeks to get your results. Can you believe that? My first test was indeterminate, so I had to take another test and wait another two weeks. I went with my fiancé at the time, and when I was diagnosed, I wasn’t really shocked, but more disappointed. My first thought was that I was going to die and my daughter was going to be all alone.”
The fact that Lydia is around – and living independently – is itself a testament to the astounding evolution of treatment for HIV/AIDS. The fact that a group of HIV positive adults is willing to talk openly and honestly to me about their experiences, both positive and negative, with the disease is a testament to how far society has come in reducing the stigma that surrounds HIV/AIDS. Lydia tells the group about how she always makes sure to carry HIV literature in her pocketbook so that when she discloses her status – which, she claims, she does “randomly” – she has plenty on hand to educate those around her in hopes of breaking down the stereotypes about people with HIV/AIDS. However, not all persons with the illness feel so comfortable in public. Stereotypes and misconceptions about the disease are still common – the group mentioned the myth they hate most is that people think that they can’t hug or kiss someone with HIV. Mary, a 42 year old African American woman who was diagnosed six years ago, shares a very different experience than Lydia. “When I hear how people talk about HIV, I still get sad and angry…and then I shut down. It hurts the most when I feel like my son is ashamed of me. He doesn’t want his friends to find out I’m HIV positive so he keeps them away from the house.” It seems that for many, we still have a way to go towards fighting against the stigma of HIV/AIDS that will allow many with the illness to live openly and free of shame without fear of harassment or retribution.
Another theme present throughout the discussion is denial. For many persons with HIV/AIDS, receiving the initial diagnosis was a difficult thing to face. Gregory, a 49 year old African American man, spoke about the day he was diagnosed two years ago: “My doctor told me the bad news in her office and then I went on my way. I went home and just went about my business for the rest of the week. I didn’t really know what else to do.” Mary is still coming to terms with her diagnosis six years later, noting that she often tries to push it out of her mind until she gets sick enough that she can’t ignore it. She admits she should make her illness more of a priority in her life but doesn’t quite feel ready to face it head on.
When it comes to advice they would give to those newly diagnosed with HIV, the group has plenty. They all agreed that medical care needs to be a priority for everyone living with HIV/AIDS. Lydia emphasized, “Do not discontinue your medical checkups – even if you feel healthy! That was my mistake and I wound up getting really sick by ignoring my healthcare needs.” Mary and Gregory agreed, and also pointed out the importance of taking your medications regularly. “I have come to terms with the side effects,” Mary shared. “The important thing is to take the meds that the doctor gives you and tell them if you want or need a change.”
It is clear that a lot has been done in thirty years, but there is still further to go. The clients’ discussion today points to the fact that an effective support network is still essential to dealing with the initial “surprise” of an HIV diagnosis, but the overall outlook of HIV/AIDS is no longer the doom-and-gloom scenario of mere decades ago. As providers, we need to continue to be responsive to our clients’ needs and change our approach as treatments and dialogue around HIV continue to evolve.