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 treatments.

Today, facial lipoatrophy is almost exclusively limited to long-term HIV survivors who used medications like d4T and DDI more than 20 years ago.

I’m one of those long-term survivors. When my symptoms began to appear, it meant that the choice whether 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 for 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 was 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 from 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 a doctor and thousands of dollars of various “facial filler” products injected into my face. It wasn’t easy trusting a physician with this—my face may have been sagging, but it’s the only one I have—but with some careful research I found an experienced and empathetic specialist.

I chronicled my journey through video blogs that span more than six years. 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 them.

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.

And although no one loves the aging process, mine is tempered by 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. The former Atlantan can’t bear to give up his 404 area code phone number since moving to Baltimore last year.

2 Responses

  1. Mark S. King

    Because it is the question I am asked most often, I will say that my physician was Dr. Gerald Pierone in Vero Beach, FL. He began as an HIV specialist and, through helping his own patients with facial wasting, has become the most experienced in the country. There are further details in the video blog.

    Reply
    • James Allen

      A great article, I was particularly impressed by the manner in which you came to the decision to combat your own facial wasting. Thank you for your honesty as always.

      Reply

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