Queerty contributor Mark S. King gets candid about the physical effects of long-term HIV survival – and the lengths he has gone to correct them. He chronicles his treatments and their results in a video, below.
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. 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 (or facial wasting), were changed or abandoned for better treatments.
Today, facial wasting is almost exclusively limited to long-term HIV survivors who used medications like d4T and DDI more than 20 years ago.
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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?
Related Post Also By Mark King: What Poz Guys Need Negative Guys To Know
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 of multiple visits to Dr. Gerald Pierone in Vero Beach, Florida, to have 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. And God knows I didn’t want to end up looking like a Real Housewife.
It was only after careful research that I felt comfortable in having found an experienced and empathetic specialist in Dr. Pierone. (I encourage anyone interested in facial fillers to do their homework before choosing a provider.)
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.
I realize that the answer to HIV stigma is not to simply 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.
Kangol
Thank you for this informative, insighftul piece, Queerty. It’s something people who don’t have HIV or who may have seroconverted but haven’t lived with it for a while might not have considered.
The fact that this man and many others have survived and living with HIV for decades is a testimony to how far science and health care have come from the worst days of the pandemic.
Armiya
It’s nice to see an important informative article on here that isn’t the usual garbage discussing some celebrity and their crotch, a circuit party, or Davey Wavey.
WhiskeyJack
Thank you for this informative article.
Masc Pride
Mark, I think this could’ve come across much more genuine if you had just owned up to the conflict between reducing stigma and not wanting to look like a poz person. It’s hypocritical, but it’s also more honest to just admit that a bit of hypocrisy drove this decision rather than trying to make it seem like cosmetic procedures were a necessity or some part of HIV treatment. Cosmetic procedures to cover up the physical effects of HIV/AIDS are not the same as treating the actual virus. You can live with untreated lipodystrophy; you will die from not treating HIV/AIDS. A very big, life-threatening difference. It’s your body, so do what you want, but this essay comes off as a rather disingenuous “moment of truth”.
BigG
Excellent article.
Berubelondon
This is all fine and good if you have money but a lot of long time survivors do not have money or the prospects to get money. After years of thinking your life was over a lot of people lost contact with their ambitions, education, etc. and are finding it increasingly difficult to get back into life again after so long. Many are isolated and depressed and face increased age discrimination when looking for work. A lot of people back then had no insurance and ended up on Social Security Disability with Medicaid and Medicare as their insurance providers. While Medicare does pay for the treatment of lipoatrophy (also referred to as The Mask of AIDS) they will only pay doctors $80 to administer the drug which is, in fact, comparable to performing facial surgery. Therefore it is impossible to get a doctor who will do the procedure when your insurance is Medicare/Medicaid. They simply will not do it as the risks for malpractice lawsuits are too high and doing it would probably increase their cost of their malpractice insurance astronomically. Which means for the low income long time survivor (and there are a lot of them that fall into that category) this treatment is unavailable. This writer should feel lucky that he isn’t one of the low income long time survivors and enjoy the privilege of having his lipoatrophy fixed.
Tracy Pope
I’ve worked with a few long-term survivors of HIV who were nearly housebound due to the anxiety and emotional toll of facial wasting. Mental health is a big issue for some HIV+ people. If using this option helps then why not? The difference in personality of the long-time survivors I know who have done this is like night and day.
Bob LaBlah
@Armiya: “or Davey Wavey.”
I have always said Davey Wavey has the Wayne Newton syndrome……so damn ugly till they actually look cute. lol
@Tracy Pope: “Mental health is a big issue for some HIV+ people.”
You hit the nail on the head with that one. A friend of mine (back in the 1980’s) was an avid steroid/bathhouse/drug user who threaten to jump off the building several times once he learned he had AIDS. He found god one second and as soon as he got his weight back up he was back to “normal” until he wore himself down after returning to his old ways. I don’t believe for one second it was an “accident” when he overdosed on drugs once Karposi Sarcoma entered the picture. Mind you, this was back in the 1980’s when experimental treatments was ALL that was available and it was a death sentence more or less.
onthemark
@Tracy Pope: You put it very well in one short paragraph! I didn’t think Mark S. King really gets there. He always goes off on his “stigma” secret-code-language like everyone understands what he means by that, but I doubt everyone does.
Billy Budd
It is totally normal to desire to look as good as possible. This guy needed some help and I am so happy that he found it and could afford it. It was clearly a wonderful thing for him.
Realityis
This is only a good option for people who can afford the painful, costly injections every 9 months or so. I have had it all done. Sculpture, Artefill (which is supposed to be permanent), Cheek Implants, and nothing has worked for me. I’ve spent upwards of 20,000 dollars.
Be warned! These minor corrections are expensive and hurt like hell to have done.
Also, Dr. Perrione is a contributing expert on “Ask the Experts” on TheBody.com. But every time a question is asked regarding this subject, he gives the form letter, book text answer that has absolutely no substance, as do all of the drs. on that site.
And I quote: “If you are describing your fat loss in extremities/face and extra fat in the abdomen in the setting of treated HIV infection that indeed is a very frustrating situation for which not enough is being done. Switching off offending medications (such as AZT, D4T or ddi), optimizing nutrition, hormone levels, exercise/muscle development can help some patients. A discussion with your HIV Provider and dietician is recommended to look at your options.”
This does nothing to help people in distress and only makes them feel more depressed and anxious.
We need a cure for this, tho I don’t think one will ever happen, as those of us who have this debilitating condition are older.
It may also be that doctors are financially gaining off of our suffering and want to continue.
Anyway you look at it, Mark, you are one of the few lucky ones.
Realityis
Also Mark, I can’t help but wonder if you have gotten a significant discount in pricing for helping Dr. Perione advertise his practice.
cabe
@Masc Pride:
He doesn’t make it seem like this is part of the treatment for HIV or something necessary. He is someone who has struggled w/ this disease for a very long time and just wants to feel more attractive in his outer appearance. There is nothing wrong w/ that.
Stache
@Masc Pride: You’re right but he’s addressed it perfectly IMO.
“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?”
Stache
Great comments btw..
Chris
This choice should not be that big of a deal. Mark’s decision is not that different from the everyday decision that people make to have cosmetic surgery. I’d put HIV in the same category of those things that can accelerate or otherwise influence such a decision: smoking, drinking, excessive tanning, or even simply getting older. In the spirit of Phyllis Diller’s post-facelift comments: we repaint the outside of our homes when the old paint gets worn, chipped or even when we want to change it. Cosmetic surgery, for those who can afford it, allows people to fix up and redo their personal outsides as well.
Congrats, Mark. I hope you like your new face.
rhino79
“Many of the physical signs of HIV … are worn as battle scars… . My very survival is mirrored in my physicality. What’s wrong with that?”
One could say the same thing about signs of aging in general. Wrinkles, sagging skin, hair loss… these are signs of maturity and survival. There’s a conflict between “accepting” one’s physical appearance as it is or taking steps to change it.
Mark, you look great! There’s absolutely nothing wrong with wanting to improve one’s appearance.
Realityis
@Chris: and Rhino 79 —–
This ia absolutely not the same thing as those other things you mention. WOW. Do either of you suffer from lipodystrophy?
Don’t ever presume to think that what I am going thru, with my body fat redistribution, equates to excessive tanning.
How dare you.
To constantly know that in a matter of months I would have to re do these painful and pricey procedures continues a cycle of depression that is overwhelming.
Mark doesn’t even talk about the other problems that are associated with lipodstophy. The thin arms and legs, the big stomach, the excess fat in the chest and upper back.
Bob LaBlah
@Realityis: When the prevention treatments are much more profitable than releasing the cure (I sure as hell do believe one does exist) the cure stays on the shelf. Its called capitalism.
avesraggiana
@Realityis: They hurt and they don’t necessarily work? I’m really sorry to hear that. Doesn’t sound like a treatment regimen I would want to follow.
Scribe38
@Masc Pride: You never fail to disappoint me. Thanks.
Dave Downunder
These are the issues that don’t get discussed enough in our current community where barebacking seems to be the norm and safe sex is a negotiable act. If more young guys were aware that there can be the long term affects of becoming HIV+ then they would truly be able to make informed decisions about their sexual practices.
I know that these side affects don’t occur as much with the new drugs but there are other health issues associated with being HIV+ and the meds used to control it that aren’t discussed openly enough for the average young guy to know what his sexual choices really mean. The only message out there is that it’s no longer a death sentence but not much is discussed about side effects of drugs or the long term wear and tear on the body. It’s not a peachy bed of roses when you are on the meds long term.
myloginname
WOW! He turned out great and looks amazing!
Masc Pride
@Stache: He mentioned the contradiction but went on to explain that he feels his cosmetic procedures were no different than his antiretroviral treatments. It’s a cop out IMO. One is a matter of life and death, and the other is a matter of vanity. Instead of just owning the hypocrisy of presenting as a pro-poz activist…while not wanting to look like a poz person, he’s saying he needed these procedures like he needs his meds. He’s owning part of the truth but not all of it. Reminds me of Julie Chen’s explanations for why she “de-Asianed” herself. However, Julie Chen never tried to claim herself as an Asian activist.
Chris
@Realityis: My point was a lot simpler: people’s personal decisions about their bodies’ appearances should not be subject to the kinds of moral stuff that I am reading here. ….. And more specifically, I was talking about this author’s facial surgery as a cosmetic procedure. Not all facial surgeries work either, by the way. ….. In no way would I treat any of the other side effects of HIV and its meds as similar to aging.
Stache
@Dave Downunder: Really not the subject of the article. We all know that HIV isn’t a “peachy bed of roses”. Can you take yourself and your soapbox where it’s needed. Thanks.
Stache
@Masc Pride: Sometimes something as simple as vanity can be a matter of life and death. No one wants to look like a Poz person. Both mental and physical should be treated equally.
BKFREEDOM
Some of y’all are just plain cray cray; simply folks interested in protesting the joy right out of life. Whatever his reason(s), I’m glad the author did what makes him happy. Go get your own damn pair of shoes to walk in. Feigned outrage and over-zealous contrarians is so passe. Smooches!
avesraggiana
@BKFREEDOM: AHAHAHAHA!!! Touché!
Masc Pride
@Stache: Vanity isn’t a matter of life or death. As Mark stated, some opt to wear facial wasting as a “battle scar”. AIDS is a matter of life or death, so medications that treat the virus are not tantamount to cosmetic procedures that hide the effects of the virus that may be undesirable but not life-threatening. As far as what you’ve stated about no one wanting to look poz, I think that’s what Mark’s kind of saying without directly saying it, which is undoubtedly controversial and problematic for someone whose personal mission is fighting stigma. What if Dan Savage underwent speech therapy in efforts to sound less gay? He’d be fighting gay stigma…while wanting to tone his gayness down a bit. Mark has referred to AIDS as his “fabulous disease”, but he’s saying he doesn’t want the “fabulous” to show on his face. The words and the actions aren’t aligning.
Stache
@Masc Pride: This is no different then a cancer patient wearing a hair piece. That doesn’t make them a hypocrite if they say they’re not ashamed of it. They just don’t want to look the part.
Masc Pride
@cabe: Mark is definitely arguing that treating the physical deterioration was just as necessary as treating the virus (for him). It was clearly a mental burden for him, which he explained by including how dates could tell before being told and how that made him feel. At the end of it all, it’s his body and his right to choose what he wants to do. However, doing these “coverups” contradicts the “unapologetically poz” guy Mark has written about being in the past. I just found the way he explained the contradiction to be a bit fake. Ultimately, I think he made the “right” decision if it was really bothering him that much. He does look better and much healthier.
JamJewel
@Masc Pride: I call BS! Even though I already have an Opthalmologist whose practice includes fillers and have even participated in some experimental programs, I found this article poignant as it is a major issue of LOOKS for many of us who look in the mirror and see someone they do not recognize. You can intellectualize it all you want, even lambaste us for denying the stigma aspect for the LOOKS one, but it comes down to feeling better about oneself. Yes, it is may seem extreme to some, but as my Mom used to say, ‘Don’t knock it till you’ve tried it!”
JamJewel
@Berubelondon: Shit like this takes away our dreams of being a Trumper, waiting for our boat to come in…. nay, hoping that one day our boat WILL come in as well. So what that I’m poor and will probably never be able to afford it – all the while I was in experimental programms a prayed that the treatments would hold and wouldn’t have to be repetead, that I’d end up pretty again – I’ve copy+pasted it for when MY boat DOES come in so my world will be whole again. You may find this pathetic, but I’m not: I have a full and charmed life having survived over thirty years and am still a hero to the young HIV+ people around me who can’t believe that I have survived when their loved ones did not.
Berubelondon
@JamJewel: 30 years myself and I have never had high enough of a t-cell count to qualify for experimental treatments. Still don’t even though I am undetectable (for which I am grateful).
JamJewel
@Realityis: Yours is a very reasonable response for which I thank you, for pointing out some of the pitfalls with this particular group of doctors. I did not interpret the article to imply that the work that the writer had had done was temporary, repetitive procedures, though I had known from my involvement with some while they were in experimental studies, that those were repetitive and I had mentally eliminated them in the event I ever went looking. SO, thanks again for your valuable feedback.
JamJewel
@Dave Downunder: I went to the Chelsea Clinic on 8th Ave at the beginning of the AIDS crisis for syphilis and the counselor asked me if I was having unprotected sex and when I answered in the affirmative, he looked me dead in the eyes and said: “You’re going to die!” Young people don’t listen no matter how much education is out there, they think they are invincible. Needless to say I am HIV+ 30 years.
JamJewel
@Berubelondon: To clarify, these were free facial filler experimental treatments out of my Opthalmologist’s office where there is an A1 surgeon who started out in Lasik and now has a large HIV clientele doing fillers.
Masc Pride
@Stache: It’s very different:
1. There is no real stigma surrounding cancer.
2. Is the person regularly writing about how proud they are of their “fabulous cancer”?
Your replies — much like Mark’s essay — are more about the right to make these decisions and not about the contradiction of trying to hide effects of a disease that you’re supposedly unashamed of having.
@JamJewel: Well “lambaste” is rather dramatic. Nothing I’ve said even remotely implies I’m lambasting Mark. Lambasting and disagreeing are two very different things. I’m not saying this isn’t an issue of looks. I’m saying that’s exactly what this is: an issue of looks.
DCguy
@Masc Pride:
Where is the hypocrisy? Fighting a disease or a stigma is one thing. Wanting to look your best is another. I’m not sure I see the issue.
He fought against stigma, and doesn’t want to look sick. Not sure why that makes him a target.
Unless of course this is your usual where you support people who are anti-gay and then attack gay people as victims. In which case, ok, I get it, it’s just your usual post.
onthemark
@DCguy: Check out MascPride’s new site, “My Fabulous Self-Hating Homophobia”!
Masc Pride
Not going to bite the bait today, guys. Given the rather serious subject matter here, I think it’s rather distasteful and totally disrespectful to the writer for some of you guys to attempt to derail and devolve this into a bash session. We can agree or disagree with Mark’s viewpoint, but let’s at least give the respect of staying on topic instead of using this as an opportunity to vent personal frustrations with other users.
DCguy
@Masc Pride:
In other words, you can’t defend your comment. Ok, got it.
Masc Pride
There’s nothing to “defend”. I’ve stated everything quite clearly. As for the parts of your comment that actually were germane to topic, if you scroll up and read my previous comments, your question has already been answered in detail. There’s also no question about whether or not a contradiction exists here because Mark even pointed out that he wrestled with it before making his final decision. My comments were not about whether he has a right to do this or not, and they were not about whether a contradiction exists or not (especially since the author mentioned there was a conflict). My comments were about the explanation he gave regarding the contradiction. Let’s be very clear about what’s actually been stated before we rush to draw our claws.
DCguy
@Masc Pride:
No, you were saying he was being hypocritical. I pointed out why I didn’t think so and asked you why.
You then refused to answer. This isn’t drawing claws, this is asking you your reasoning. If you do not want to answer that is your decision.
He explained his reasoning, what about that did you find unsatisfying enough to call him out?
Masc Pride
For the second time, everything you’re asking has already been addressed (multiple times). You’re refusing to read previous comments that would answer your all questions, and that is your decision. These personal arguments you’re always eager to start are immature enough in stories on pop stars or politicians. Again, given the topic, let’s act like adults and not do this here. There are more trivial stories in which you can continue your mission to oppose me at every turn. This will be my last reply to you here, and you can interpret that as whatever you want it to mean.
David Bolton
Who on earth would criticise this guy for wanting to take steps to improve his appearance and self-image?
He looks great. It was important to him, and might give hope to others with similar issues. Period. End of story.
Realityis
@David Bolton: I am not criticizing Mark for having the work done. What I am saying is that the process is exhausting, expensive, painful, and depressing. Even the permanent fillers are a disappointment. Believe me I have had it all done, and don’t look half as good.
I taught fitness and competed in sports. One at a national level, but now I don’t want to walk into the gym.
Many of us cannot afford the work that Mark has gotten either, so I am sure seeing how well it works for him may cause a bit of depression and sadness in those that don’t have the option.
Also, the face is not the only give away when it comes to lipodystrophy. There’s the thin, veiny arms and legs, the internal fat in the abdomen, the gynocomastia and fat of on the shoulder. All of these are a give away and marks that person. If Mark exhibits any of these other manifestations then he may still be seen as HIV positive.
What I’d rather see is Mark advocating for research and a cure. I certainly would rather that to this option.
This article feels like an advertisement for Dr. Perrione and I for one am tired of paying my hard earned money for a quick, temporary fix.
Im 51 years old and the baby of my family but people are surprised when I or a sibling mention that. I wear long sleeves and pants in the summer. I don’t want to live the next 20 years this way.
doc_jonh
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faih_dourod
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