On World AIDS Day 2013, it is gratifying to see increased attention paid to stigma, which has a devastating impact on prevention, testing and treatment. Creative and thoughtful campaigns utilizing social media and other venues are beginning to make a difference. Some anti-stigma programs are even being mandated as part of international aid. While many programs don't yet effectively address institutional, governmental and religious power structures that perpetuate stigma, they are impacting education and skills to build empathy, each of which is extremely important.
I have lived with HIV for so many years that the whole issue of disclosure seems moot. Every important person in my life knows my status, as do my colleagues, clients, and for that matter, anyone who comes across my postings on TheBody.com and The BodyPRO.com. I am well aware of the complexities of disclosure and work with others to address their concerns, but it has been a long time since I experienced the issue.
It began simply enough. My doctor's office called to say that he wanted to speak with me directly about follow-up lab results. When pressed, the staff said he would not discuss anything over the phone. We scheduled an office visit for the next available appointment, several days away. Over the years I have received the same summons many times. They begin with a call stating that the doctor needs to see me in person. Memories of those calls came flooding back, along with an uncomfortable heavy sensation in my stomach. Some of those calls have been devastating (cancer), others were non-events. I hung up the phone, closed my eyes and tried to center myself, with little success.
She arrived on the stage covered in colorful braids amid stylized African dancers. Drums played exotic rhythms as she unveiled herself before 800,000 people -- the largest in the history of Central Park. Dressed in a glittering orange suit with billowing fabric, Diana Ross welcomed the cheering masses as an ominous summer storm darkened the sky. She created a magic spell with song and, at one point, implored the audience to "make a wish and let it go." As dusk fell the winds picked up and sweeping veils of rain moved in over the park. Television cameras captured her soaked hair and face. Oblivious to the torrential downpour, she became one with the crowd.
It began rather insignificantly but quickly escalated. The group which I had facilitated for several years consisted of ten to twelve gay men of all ages, most of whom were HIV negative. That night I mentioned a new service for people living with HIV and one man asked, "Why do the positive guys get everything? What about us negative guys?" Another group member spoke up about poz friends who were eligible for all kinds of support. He was indignant that he had been laid off, was struggling and, unlike "them," lacked access to community services such as food banks and housing assistance. Someone else expressed annoyance, and a fourth growled his protest. A strong and divisive vein of anger within the gay community had been exposed.
Todd sat slumped on the sofa in my office. He avoided eye contact and described a particularly painful experience with stigma. He had recently come around the corner at his part-time job and heard several co-workers speaking about him and his HIV positive status. More specifically, they were discussing how he might have acquired the virus by speculating about the nature and frequency of his sexual activities. It was meant as a cheap laugh among themselves, but for Todd it meant much more. Although he made no effort to hide his HIV status and was "out" at the office about being gay, hearing his co-workers making disparaging remarks about his sex life and his health status in such explicit terms felt like a strong punch in his gut. He had a brief flash of anger, telling them to shut up, and then stormed out, pulling inward and automatically falling into the old habit of numbing himself by detaching from the emotional pain.
Oppressive temperatures were hitting the century mark, adding to the surreal scenery surrounding me. The air was thick with dust and it was unnervingly still, portending the violent storm that would sweep through in just hours. Before me, in the bright afternoon sun, was a sea of AIDS Memorial Quilt panels carefully assembled on the mall in Washington. They seemed to stretch forever. In the distance the dome of the Capitol rose above the colorful sea of fabric. Behind me, a volunteer somberly read the unending list of individuals claimed by HIV/AIDS.
Several attendees drove fifteen hours from St. Louis. Others came by caravan from Atlanta. In the hotel lobby there were happy reunions of friends who hadn't seen each other since last year. Overall nearly four hundred and fifty people made their way from 22 states to the white sandy beaches of the Florida panhandle in early March. It was spring break, but their purpose was much more a matter of life and death. They were gathering for Positive Living 15, the largest conference in the nation specifically for people living with HIV.
Even the bed sheet touching my skin was intolerable. The sharp pain was centered in my toes and had kept me sleepless for three nights in a row. It was the worst neuropathy I had ever experienced and I was near despair. My only relief was to lower my feet and sit up in a chair trying to sleep. That was my situation last year when, for some unknown reason, my neuropathic pain suddenly escalated. Over the years I had been relatively lucky. I had become accustomed to numb and tingly feet but I had rarely experienced such severe discomfort. Only on one other occasion, when I broke a toe, had the nerves in my feet rebelled with excruciating stinging which had lasted for months.
As the old year rolls over it's natural to review how well our lives have functioned during the past 12 months. Many of us take the opportunity to make resolutions about changing our behavior. These often concern diet, getting to the gym, or cutting back on other things that might not contribute to our health. This well-intentioned exercise often collapses, falling away within weeks (or even days) as our resolve and the routines of daily living once again intrude into our hope that this year will be different.