Living With HIV: Are We "Damaged Goods"?
August 15, 2012
Todd sat slumped on the sofa in my office. He avoided eye contact and described a particularly painful experience with stigma. He had recently come around the corner at his part-time job and heard several co-workers speaking about him and his HIV positive status. More specifically, they were discussing how he might have acquired the virus by speculating about the nature and frequency of his sexual activities. It was meant as a cheap laugh among themselves, but for Todd it meant much more. Although he made no effort to hide his HIV status and was "out" at the office about being gay, hearing his co-workers making disparaging remarks about his sex life and his health status in such explicit terms felt like a strong punch in his gut. He had a brief flash of anger, telling them to shut up, and then stormed out, pulling inward and automatically falling into the old habit of numbing himself by detaching from the emotional pain.
For Todd, the words of his colleagues echoed hurtful messages he had gotten his entire life. When he came out as a gay man he had alienated some friends and family. After finding out he was HIV positive, his partner left him. He struggled to cope with the psychological adjustments necessary for living with the virus and, although most of the time he had decent self-esteem, such hurtful words consistently pushed him out of emotional balance. Over the years a small part of him began to think they might be true. At work that day he berated himself for not defiantly rejecting their words, but he could not bring himself to speak up. They resonated because at some deep level Todd believed that he was indeed "damaged goods."
He was experiencing one of the great, untreated aspects of the HIV/AIDS epidemic: stigma. And Todd's version was one of the more insidious: internalized or "felt" stigma. Years of living in a society that proclaimed certain behaviors or characteristics to be tainted had left their mark. Like many, Todd had several layers of stigma. He was a gay man and a person living with HIV. Some people have even more layers: gender, race, age, ethnicity, poverty, sexual minority, nationality, immigration status, and almost anything else that can be used to classify and judge. The personal costs are enormous. Years of experiencing such stigma creates a defensive shell into which a person retreats, excessively alert for any sign of judgment, at times flushed with shame, and believing at a deep internal level that they are indeed flawed.
Stigma is often imposed by those who don't share a particular characteristic deemed unfavorable. I remember that in the early days of the HIV epidemic many people declared that there were two kinds of people with HIV: the "innocent victims of AIDS" (those that acquired the virus through transfusion) and the others (the guilty variety) who were infected as a result of their own [read perverse] sexual activity. Yet, stigma can also come from those who could be expected to have more empathy. I've been surprised recently to discover that gay men who are long-term survivors can have strong negative feelings about other gay men who are newly-infected, and as a result can impose a stigma of their own. "How could they get infected these days when so much is known about how it's transmitted? When I was infected we didn't know any better. What's wrong with them?"
Sharing a characteristic, then, doesn't necessarily imply unity or safety from stigma. For example, gay men can be particularly harsh with each other. Personal ads are filled with an emphasis on "masculine only" and abbreviations such as "DDF" (drug and disease free) and UB2 (you be, too). It is true that people have preferences, but these words uncomfortably echo the language of oppression.
Stigma first caught the attention of researchers in the 1960s, when Erving Goffman studied groups of "deviants": prisoners, mental patients, and homosexuals (I guess we have made some progress). He found that those who hold the power in any society define certain characteristics as undesirable and then link those characteristics to certain other groups of people. Those stigmatized groups then become "tainted" and vulnerable to various forms of discrimination (and even criminalization). At the root of stigma, then, is power: those who have it often stigmatize. Recent theorists have taken this one step further. Not only do those in power stigmatize, but the act of stigmatizing certain groups of people may be necessary to actually hanging on to that power.
How does stigma affect HIV? Experiencing stigma increases someone's vulnerability to acquiring the disease in the first place. Fear, poverty and countless other factors reduce a person's willingness or ability to sexually protect themselves. HIV stigma itself prevents many people from getting tested because they worry about the assumptions that others will make about their behavior. Multiple "layers" of stigma can also have an impact. Where I live, for example, the gay and lesbian community center provides free testing. That is the closest testing site for the nearby Haitian community, but very few Haitians get tested at that center (if they are inclined to be tested at all) because of gay-related stigma.
Stigma prevents others from following through on treatment. One study found that 36% of people living with HIV had experienced some form of discrimination from a health care provider. People also worry that if their status becomes known the result will be rejection and an adverse effect on their social support network. Medication adherence can also be impacted. One client of mine routinely missed his medications when he had dinner with his parents, who didn't know his HIV status. Another woman I know wouldn't take her medication at certain times when her children were home because they made her sick for several hours.
There are stigma reduction programs in place, although their effectiveness is difficult to measure. Most focus on interpersonal dynamics such as decreasing a person's fear of being around someone with HIV. They provide the opportunity for healthcare providers, family, and friends to get both information and work through their own feelings of fear or judgment. Studies show that the most effective programs of this variety combine several approaches. For example, a presentation by someone living with HIV is most effective when accompanied by a second type of intervention, such as an exercise to allow people to process their own feelings.
For persons experiencing stigma, interventions mostly focus on cognitive behavioral approaches. These work by changing internalized negative beliefs about oneself and building components of self-esteem and a sense of personal control. Stigma interventions acknowledging the role of power need to be developed. As noted earlier, stigma and discrimination are intertwined with societal power and control. More needs to be done in terms of education, legislation, and advocacy to reduce stigma at this "macro" level.
Familiarity with a member of a stigmatized group can increase empathy and thereby reduce stigma. If I am in a situation where declaring my own status might help reduce stigma, I try to do so. I led a workshop at a recent professional HIV conference and, in the course of my presentation, mentioned my own HIV positive status. Reactions ranged from shocked to indifferent, but, most importantly, several people who were HIV positive approached me afterwards to say how empowering it felt for them to hear a trainer at a crowded conference declare his status.
Can mass media help in reducing HIV-related stigma? There is little objective research, but a clever study recently caught my eye. The American soap opera "The Bold and the Beautiful" apparently followed an HIV-positive character over a two year period. The show is broadcast in a variety of countries, and one researcher tracked changes in HIV-related stigma in, of all places, Botswana. Remarkably, at least in that country, simply being exposed to a HIV-positive character on television increased empathy toward persons living with the virus and reduced stigma. Damaged goods? Definitely not.
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This article was provided by TheBodyPRO.com.
Comment by: TonyD
Mon., Aug. 27, 2012 at 3:54 pm UTC
In the old days, guys would live normal lives and die a few months after diagnosis. Today modern medicine saves the physical bodies of the newly infected at the price of living in constant fear and social isolation until the end of our lives. Who got the worst deal? I think we did. When you have children or family to attend to, taking medication makes sense of course, because it allows you to fulfill your obligations to others. But my parents are dead now, I do not have children and realize the prospects of a cure are low in the next 10 years at least and lower still that I will find someone who, in addition to being a fit with respect to everything else, will want to be with me because I am HIV+. Every time I take those pills all I think is I am actively contributing to prolonging the pain of my own unhappiness. I can't believe I am saying this but I am close to pulling the plug on treatment. The thought of another ten or 20 years of this horrendous existence to then go on to a nursing home for the old and infirm, is more terrifying to me than the idea of my immediate demise. It seems like the logical choice in circumstances I cannot change. I no longer have the energy or the will to fight.
Comment by: M. Stone
Sun., Aug. 26, 2012 at 1:47 am UTC
I try to buffer stigma of virus carrying family member and institutional or religiously-sanctioned alienation rejection by our group with satirical view of this and other themes in comic-strip.org. Even though acquired in transfusion in '85 it is hard not to be viewed as a liar, and always exhausted explaining how we should not be confused with drug-users or the promiscuous . . .
Comment by: pos since 08
Sat., Aug. 25, 2012 at 1:29 am UTC
I've kept my HIV positive status fairly private. Mine is a lonely life because of HIV. I have yet to try and meet a positive mate and, as a result, I am alone. I used to be, and still am, a guy with a great heart and huge capacity for love and affection.
I am writing to sort of vent about a recent negative experience I had with someone I have confided in about my status. I trusted him to be understanding and to be there to offer just a little bit of support. He presented himself as the type person who would be understanding. He is gay, he is liberal, and he is most often quite reasonable. I trusted that he would be a good person to confide in.
Instead, he has turned out to be a sort of bully. I have some symptoms related to my HIV. My face really itches some times (it started immediately after I seroconverted. I used to kind of complain about it and his reaction was to mock me whenever I did so. His reaction was somewhat childish, so I stopped complaining. No big deal. I started my meds 4 months ago and I am pretty fatigued. I sleep A LOT. He calls me lazy. I tell him it's the meds. He tells me I'm lazy. The topper was two days ago when I mentioned that I was lonely and that I really miss having physical contact with other people. For some reason (maybe he was having a bad day) he told me that I contracted HIV because of my own stupid behavior and that I deserved what happened to me. That really hurt my feelings. While I'm on my pity soapbox I'll mention one more thing. I prefer transgendered women. He sometimes mocks me for this preference. Of all the people to have confided in, this gay liberal friend seems to have been the wrong choice.
It's time for me to seek out a really great support group. I know they are out there. I am going to find one and join up. Life is a gift. I have a lot to offer. And I need to be with people who also have a lot to offer.
Thanks for letting me tell a little bit of my story
Replies to this comment:
Comment by: Douglas
Tue., Aug. 28, 2012 at 5:11 pm UTC
You don't need and shouldn't want that awful and insensitive person in your life. And clearly he doesn't deserve to have you in his.
Good luck with your support group. May you find peace, friendship and love.
Comment by: Jim
(Kelowna , B.C.)
Fri., Aug. 31, 2012 at 11:43 am UTC
I totally agree with DOUGLAS.......you should not have too put up with or have this insensitive person in your life an MOST IMPORTANTLY he doesnt deserve too be in your life either......YOU sound like a careing person.......
GOOD LUCK WITH THE GROUP SEARCH AN CONTINUE TO SEEK OUT NEW FRIENDS AN FRIENDSHIPS
Comment by: Pierre
(Tampa, FL )
Fri., Aug. 24, 2012 at 5:00 pm UTC
I wish others can read it, the story hit's home.
Comment by: C.
Fri., Aug. 24, 2012 at 8:31 am UTC
I felt the stigma in a way that one wouldn't think it would materialize. I am a gay man still living in a marriage to a woman. While I am out to her and our children as gay and hiv+ I am still largely living in the "heterosexual" world which is becoming increasingly difficult. Recently, my wife was diagnosed with renal cell carcinoma. Her surgery was very successful and the doctor at MSKCC didn't recommend any further treatment. From her diagnosis in Dec of 2012 to the present she has told many people about here cancer and has been showed amazing compassion and support from everyone around her. In stark comparison I have told almost no one and I know it due to the stigma surrounding HIV. While I haven't experienced any problems with my health care provider or health insurance and my wife and children have been supportive, I do fear others who are not knowledgeable about HIV wouldn't be so kind. I almost want to find out how others would react if I disclosed my status but I am afraid to do so. Should HIV+ people avoid the situation all together or is it "good" to experience it and get used to it?
When the HIV/AIDS epidemic became news over 30 years ago the media was all over the story. Visions of the ravages of HIV into AIDS were prevalent and this is the impression left with the public. With the appearance of the HAART treatment the media has largely abandoned the story which has left the early images in everyone's mind forever.
The media needs to show how much the HIV/AIDS world has changed. Maybe this would lessen the stigma of kiving with HIV.
Just my thoughts......
Comment by: ziyanda
Thu., Aug. 23, 2012 at 8:17 pm UTC
this is just what i needed to read:-)
Comment by: J J
Thu., Aug. 23, 2012 at 7:47 pm UTC
The fact is that after living with HIV for 20 years, I have to admit that we are damaged goods. I had to quit my job as a surgeon because of the possibility of transmission. Just by the very fact of loving someone, we can possible kill that person. It has noting to do with how the disease was acquired, just with the fact that is transmisible. No one wants to be around us. Yes, we are damaged goods.
Comment by: Rick
Thu., Aug. 23, 2012 at 7:22 pm UTC
On a recent Friday night I was in a movie theater near a group of college age guys who were all friends. One of the friends, however was seated in a different row, but when a seat opened up of the guys invited him to sit with their group. "No way, man," said the young guy, "I might get AIDS or something, sitting with you guys." Being HIV-positive, my heart sank that someone who has never known an AIDS-free world would make such an ignorant comment. I waited for the first guy to laugh along at his friend's lame joke. Instead came a simple rebuke. "Dude, that is not cool," he said, as the offer to rejoin their group was withdrawn.
Comment by: Dr. Richard A. Martin, Jr.
Thu., Aug. 23, 2012 at 6:29 pm UTC
I speak on "stigma" from a personal point of view. I have lost my ability to practice due to stigma in the medical profession which has changed my life. Still, I must say, the true cure for stigma comes from me - I give stigma power over me, if I choose to do so. Also, people who are "stigmizers" need education. Still true today, in my humble opinion is the old battlecry, "Silence =Death".
Comment by: abhi
Thu., Aug. 23, 2012 at 5:29 pm UTC
Most of us, who have lived with all kinds of discrimination in this society, have lived with the idea "Are we damaged goods" for a very, very, long time.
Comment by: Alex
Wed., Aug. 15, 2012 at 5:39 pm UTC
Heaven forbid, someone wanting a drugs and disease-free partner. Pure persecution and oppression!
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Comment by: Andy
Sat., Sep. 15, 2012 at 11:21 pm UTC
No, not "pure persecution and oppression. Pure stupidity and denial. What do you think this "DDF" BS is, some sort of quarantine? It's not quarantine. Quarantine presumes that you're actually decreasing exposure by removing certain people from a population. Gay men who are tested and treated probably aren't more infectious than the average of gay men who think they're neg. In light of that fact, what we're looking at is segregation, not quarantine. Stop pretending like this is some sort of legitimate health option. I'm so tired of negative gay men pretending they're some oppressed minority just fighting for self preservation, ignoring certain facts to make a case that blatantly discriminatory behavior is anything but backwards and cruel. If you want "DDF" and you've heard the schpiel about undetectable, condoms and the fact that anyone could be poz, you're a f***ing bigot, you're willfully ignorant and your far dumber than most of the people I know who actually manage to live with HIV. Period. David might be a nice guy and a therapist who is going to validate your bigotry as part of an attempt to convince you, but the rest of us are growing increasingly sick of this stupidity, and our patience is exhausted. We're angry at the laws. We're angry at the histrionics. We're tired of being relegated to second class citizenship for no good reason, and then maligned as "oppressors" when we point it out. We're tired of people who choose not to listen to facts. Grow up and wear a rubber. Stop conflating "drug and disease free" like some ignorant 19 year old slut looking for a good time while ignoring the reality of the risk he puts himself in, and act like a man!
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