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HIV/AIDS Blog Central

Mask, or, Losing Face

By fogcityjohn

July 19, 2010

"[F]or to lose one's face is to lose one's spirit, which is truly the 'face', the dancing mask, the right to incarnate a spirit ... It is the veritable persona which is at stake ..."

Marcel Mauss

You almost certainly wouldn't notice it if you saw me, but I wear a mask. It's not the kind you buy at the novelty store for Halloween, though. My mask is actually extremely unobtrusive. In fact, that's its intended purpose, to keep me from standing out.

You see, not long after my diagnosis, I developed lipoatrophy, a condition in which one's subcutaneous fat -- the fat beneath the skin -- wastes away. For months I watched, horrified, as my face changed before my eyes. It became more drawn as my cheeks slowly melted away. My lips grew thinner, and the corners of my mouth began to turn downward. The layer of fat underneath the skin was vanishing, and with it the face that my mind had come to identify as me.

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If you'd seen my old face, you might well wonder why anyone would make a big fuss over losing it. I wasn't what most people would call particularly handsome. I freely admit my face wasn't anything special in the looks department, but it was me. Over the decades, that face had become my mental image of my persona. Those of us with HIV all know that the virus can change how we look at ourselves, but I hadn't really expected that it would actually change how I look. I didn't realize that HIV might rob me of the physical embodiment of my identity -- my face.

I sought treatment for my lipoatrophy, but I discovered there was none to be had. No one fully understands what causes it, and so there are no therapies or cures. The only available remedy was cosmetic filler. I tried Sculptra injections, but my condition kept getting worse, and I got tired of shelling out money for a filler that wasn't permanent. Eventually I decided to go to Tijuana for treatment with PMMA (polymethyl methacrylate), a permanent filler that's available in Mexico at a reasonable cost.

Over the last three years, I've had three PMMA treatments. The procedure involves the injection of PMMA microspheres beneath the skin. In the weeks following the procedure, the body encapsulates the microspheres in collagen, and it's the collagen that fills in the wasted areas. So gradually my face filled in, but my "new" face isn't the same as the old one. The differences are mostly minor, and for the most part they're too subtle for anyone but me to notice.

In some ways, my new face is "better" than the one it replaced. Lipoatrophy has rid me of the bags around my eyes and removed the slightly sagging flesh in my cheeks. The collagen that encapsulates the PMMA microspheres is firmer than fat, so my new face has a smoother, more uniform appearance. Gone are the laugh lines and crow's feet. They've been plumped up by filler. Because of the effects of the filler, most people are surprised to learn I'm nearly 50. They look at my smooth, unlined face and tell me they'd have guessed I was 40, or even 35.

I'm mostly happy with the work of the plastic surgeons I've seen. They've made it possible for me to conceal my illness from the world at large and thus to escape the stigma that comes with looking like one has HIV. I'm not out to my family about my serostatus, and the filler has kept them from suspecting that anything is amiss. For all of that I am grateful.

But while this treatment has masked my illness, it can't restore to me the thing I've lost -- my image of myself. Simply put, I no longer look like me to me. The face I now see in the mirror is not that of the man I used to recognize as myself. It is instead a facsimile of my face. It's an excellent fake, one that's good enough to fool pretty much everyone. Oh sure, those who haven't seen me in a very, very long time may pause and comment that I look different somehow, perhaps thinner. My usual response is just to laugh and ascribe any perceived change to my rapidly receding hairline. So far, that's never failed to satisfy them.

Thus this mask fools everyone but me. One perverse effect of this is that it has made it almost impossible for others to understand my loss. When I try to explain my profound disappointment over the changes in my appearance, friends tend to say, "You look fine!" Or they'll say, truthfully, that they can't see much difference. They mean all this in a good way, and they intend their words to be comforting. Yet I am left feeling like the victim of a robbery that no one will believe took place.

I know there's no way to recover what I've lost. My old face, the one I think of as the real one, isn't coming back. Forced to choose between my mask and the gaunt, wasted look of lipoatrophy, I've readily chosen the mask. But there are mornings when, as I prepare to shave, I look in the mirror and I long for that old face, the one with the lines and creases, the heavy eyelids, the dark circles, and the sagging skin of approaching middle age. I yearn for the face that reflects my spirit, the one my mind still tells me is the "real" me -- the face forever replaced by this mask I cannot remove.

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See Also
An HIVer's Guide to Metabolic Complications
TheBody.com's Lipoatrophy Resource Center
Ask a Question About Facial Wasting at The Body's "Ask the Experts" Forums
More Personal Accounts of Facial Wasting (Lipoatrophy)
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Reader Comments:

Comment by: william Matewere (malawi) Tue., Jul. 27, 2010 at 10:19 am EDT
many people in africa are suffering from this. though governments in africa advocate for councelling and testing but they do not have the capacity to cope up with large numbers of people. all what is available is one has to get tested, when the CD4 count read -350 then they start treatment and thats all.
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Comment by: fogcityjohn (San Francisco, CA) Mon., Jul. 26, 2010 at 7:29 pm EDT
@ Terron: Thanks for reading. I know you're there for me, and I appreciate it, even if it's not obvious sometimes.

@ John-Manuel Andriote: May you never experience lipodystrophy. I wouldn't wish it on my worst enemy. Yes, our bodies change as we age, but lipo accelerates and exacerbates that process. One has no time to adjust. That's why my mind can't yet recognize as me the face that my eyes show it when I look in the mirror.

@ Rodger in Toronto: I'm keenly aware of my own good fortune amidst this misfortune -- I can afford cosmetic treatment, whereas many cannot. One "positive" step on this front has been U.S. Medicare's approval of payment for Sculptra injections for HIV+ people experiencing lipo and resulting depression. Perhaps large private insurers will now follow suit. To its credit, Kaiser-Permanente has covered Sculptra injections for years.

@ Eddie in Houston: You're so right. The photos are necessary if you want to be able to judge whether or not you've got lipo. But the "before" pics can be tough to look at if you do develop the condition. I avoid looking at pictures of me from my pre-seroconversion days. Best not to think back on what's been lost.
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Comment by: Eddie (Houston, Tx) Mon., Jul. 26, 2010 at 2:37 pm EDT
I always encourage people,even my friends to take photos of themselves once a month especially the face. It is quite surprising to go back to those photos and see what you looked like before. There may be a downside to that tough. Nostalgia, which is usually accompany by sadness. I hope you have a spectacular day man.
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Comment by: Rodger (Toronto) Fri., Jul. 23, 2010 at 9:11 am EDT
This is a brave, eloquent and beautiful post. I am terrified of the possibility lipoatrophy. I guess the lesson is as with seroconversion, mourning of a loss must occur. And of course access to lipoatrophy-remedying therapies is a class issue -- making it possible to experience both good fortune and sadness simultaneously, in quietly profound ways. Thanks for sharing this, John.
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Comment by: John-Manuel Andriote (Norwich, CT) Thu., Jul. 22, 2010 at 10:18 pm EDT
This is heavy stuff, but thank you for putting it into words. I don't have, and hope never will have, lipoatrophy. The prospect of having it has haunted me since I was diagnosed HIV+, and had to immediately begin taking meds, in 2005.

So on one hand, I can only read and listen supportively. On the other hand, though, I have a few thoughts. Perhaps one will be helpful for you. You say that you "yearn for the face that reflects my spirit."

Yet in a very real way, you now HAVE the face that reflects your spirit--if you consider the fact that your spirit's desire to live well, to thrive and not merely survive, to show the world a man who chooses to look and feel good on the outside because it's how he feels inside.

My body doesn't look the way it did 20 years ago--and I'm still adjusting to the "new" reality of what I look like at nearly 52 when in my mind I see a younger version of myself. Men's bodies change and thicken as we age. Our self-image doesn't always keep pace with the changes. But we learn to adjust.

And we learn that the main thing is to keep on keeping on. We're still HERE. That is something to smile about. And a smile is a beautiful thing on any face.
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Comment by: Terron (San Francisco, CA) Wed., Jul. 21, 2010 at 6:23 pm EDT
Hello, John. This is a very haunting post. It took me some time to muster up the courage to read it, as I had a strange feeling that it would contain the very dark emotions that you choose not to disclose, face-to-face.

While I am unable to relate to your experience of having filler applied beneath your skin, or being HIV Positive, I am able to relate to your "pain," simply in a different arena.

I know that words are not enough to make the pain dissipate, but please be assured that your friends TRULY LOVE, AND ACCEPT YOU for who, where, and what you are. I know that as you age, and the things that you must go through to conceal this disease is eating away at your spirit. It is up to you to keep your chin up, and to press on. There is no turning back. You are blessed in many ways, so there is absolutely no reason to feel, or be sad. Your present, along with your future are ALL contingent upon your spirit, your attitude. This post allows me to understand your recent behavior, and your lack of motivation, NOT that it is acceptable, but simply allows for more insight.

I have told you time, and time again, that I am, and will always be in your corner. You're still present, so make the most of it. WE ARE ALL STRUGGLING WITH SOMETHING. Choose "Life," John. Choose Life.......

Sincerely,

Terron
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fogcityjohn

fogcityjohn

My name's John. I'm 49 years old. I'm a lawyer by profession. I now live in beautiful San Francisco, California, after spending a long time on the east coast. I was diagnosed in 2004, so I've been positive for something like five years.


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