Shame and Stigma: Standing Strong in the Face of AIDS
I have been living with HIV/AIDS for nearly 27 years. I tested positive at a time, and in a rural area of Tennessee, where no one dared to let others know that they were infected.
On World AIDS Day 1994, I changed all that by becoming the first person in my community to go public with my HIV-positive status. I did it for many reasons, one of them being to put a local face on the disease.
There was a degree of shame associated with HIV/AIDS and, in the early days after my diagnosis, I held shame within myself. But, by being a public face of someone living with HIV/AIDS, I eventually shed the shame I carried, and in the process, I became not only a voice for the voiceless but a voice for myself.
Dr. Stephan Raffanti, my infectious disease specialist, once said, "Whether we realize it or not, we all are affected by HIV/AIDS." Those who are affected include partners, family and friends who are directly impacted and often respond with care and compassion. Those who are indirectly affected may not realize it and go about their lives. We who are infected play a role in how others respond to this epidemic, frequently by throwing ourselves into awareness events, such as AIDS Walks, World AIDS Day activities, and the like.
Shame is a great weight to carry, and we all, at some point in our lives, have dealt with shame in one form or another. Shame associated with HIV/AIDS, however, is different, in my opinion. Speaking from my own experience, I had to come to terms with my feelings about my life, including the regret of disappointing those who were most important to me, reproach from those who would not accept me and how I became infected, and anxiety over how I would carry on following the news of my HIV-positive diagnosis.
Many people express disgust toward those of us who are infected and may even try to worsen our feelings of shame, perhaps thinking that such actions somehow make them superior. Sadly, all these years later, in spite of public education campaigns, there is still a great stigma attached to HIV. Just today, I experienced it and was caught a bit off guard.
There are those who cannot be as open with their lives and HIV status as I am, for a variety of reasons. And, as someone who grew up in a rural area, I can somewhat understand. With that being said, however, it takes those like me to rise up and make a difference, to try and erase the shame, stigma and judgment that continue to be part of HIV/AIDS.
Neither I nor anyone else who is infected can change our status. All we can do is the best we can to incorporate our infection into our lives and not carry the burden of shame. In order to live well, we must cast off the negative views, words and actions of those who try to shame us into silence and instead use them to renew our determination to live our lives. I realize this is easier said than done, and even after all these years, I find myself questioning how I ever made it to this place in life. I will still stand strong, even in the face of those who try to cause doubt within me.
Read Harold's blog, Positive and Beyond: A Rural Perspective.