Some years ago, I told someone that I was HIV positive before I agreed to his invitation for a date. “Yeah, I know,” he casually replied, and then he looked a little embarrassed, as if he shouldn’t have said it. It was too late, of course; I knew exactly what he meant.
He could tell my HIV status by my face. I had The Look.
The sunken, wasted cheeks of someone living with HIV. It became a common manifestation in the 1980s and persisted until the medications that caused the condition, known as facial lipoatrophy, were changed or abandoned for better treatment.
Today, facial lipoatrophy is almost exclusively limited to long-term HIV survivors who used medications like d4T and DDI more than twenty years ago.
I’m one of those long-term survivors. When my symptoms began to appear, it meant that the choice to share my status, as an activist or on a personal level, had been taken away. My HIV was written across my face for all to see.
I am proud of my history advocating and living with HIV. But as uncomfortable as it may be to admit, it’s a lot easier to live openly as a person with HIV when you don’t look like it.
I felt ashamed of my appearance, and then conflicted. For someone who has been fighting so hard to reduce HIV stigma, what is there to be ashamed of, exactly? Many of the physical signs of HIV – from weight loss to fat redistribution to facial wasting – are worn as battle scars, if not badges of honor, by thousands of people living with HIV. My very survival is mirrored in my physicality. What’s wrong with that?
Eventually, I realized that correcting my facial wasting was no different than improving my t-cell counts. I wasn’t making a political statement; I was improving my health and well-being.
And so, I began a journey that would include multiple visits to Dr. Gerald Pierone in Vero Beach for the injection of various “facial filler” products into my face. It wasn’t easy trusting a physician to correct this – my face may have been sagging, but it’s the only one I had – but with some careful research I learned that Dr. Pierone was the most experienced in the field.
I chronicled my journey through video blogs that span more than six years (the videos can be viewed on MyFabulousDisease.com). They include the treatments available for facial lipoatrophy, information about patient assistance programs for temporary fillers, and the dramatic results of permanent fillers, with plenty of “before and after” footage along the way.
The supportive response to the videos has taught me, once again, that the things about which we may be the most ashamed are the very things that can help someone else, if only we allow ourselves the courage to speak up about it.
I’m not kidding myself. Facial fillers are not the fountain of youth, no matter what “The Real Housewives” may think. My own aging process hasn’t been slowed down at all, but I like to think that my face looks like it is aging naturally, as if HIV wasting had never been an issue.
The answer to HIV stigma, of course, is not to wipe away any evidence that we may be living with the virus (beauty may be skin deep, but stigma runs far deeper). This has been an exercise in healing for me, and not an effort to escape the realities of my life and my health.
Today, I can complain about the ravages of getting older right along with everyone else, without the added layer of self-consciousness that once burdened me. And although no one loves the aging process, mine is tempered with the knowledge that I have survived when many have not.
It is gratitude, nothing more, that is written across my face.
(Mark S. King writes the award-winning blog, MyFabulousDisease.com.)