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What Does HIV/AIDS Stigma Look Like in Your Life?

November 21, 2011


What Does HIV/AIDS Stigma Look Like in Your Life?

Stigma: It can play a role in the ways people view their relationships, their careers, their health, their lives. Because of the ways it creeps into and clouds judgment on other aspects of the epidemic, many who are living with HIV/AIDS and/or working in the field believe that stigma is the most profound challenge we face in the fight against HIV/AIDS. We asked HIV/AIDS community members from all over the U.S. to tell us about the different forms stigma takes in their lives.

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Reader Comments:

Comment by: Lee (Washington, DC) Tue., Dec. 13, 2016 at 8:15 pm UTC
Office workers everywhere in DC has turned in major corporate style businesses and they have HR provide tests about your personal life. Naturally, you have to lie on these forms. With the competition of people moving here from everywhere because of the high wages, it get difficult and people will always find ways to say your performance is not up to par just to get rid of you. You have to be very careful here because the stigma is high. And even more higher for me as a black man. One wrong step and I am out the door. It even prevents dating from being an easy task. People are scared of death mostly and don't want to end up a caretaker. So even those who are positive are even scared and tend to stay single.
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Comment by: Howard Blunt Jr (lake wales Florida) Sat., Nov. 19, 2016 at 6:38 pm UTC
i am shock how professional lawyers treat people with hiv. they know this illness will affect your judgement and keep vital information from you. It is a shame that these people are not held accountable.
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Comment by: Ben (NY) Sat., Nov. 12, 2016 at 10:33 pm UTC
I'm not HIV positive. Several years ago I met a woman living with the virus. Within a few minutes of our conversation, she revealed it to me. Just for being up front and not hiding it to me. I was willing to give a her a chance and start a relationship because I felt that she wasn't out to pass on the disease to me. She could've been like the others and kept her mouth shut. I could not go with it because my family and friends were strongly against it. They told me "if it was the other way around she wouldn't have had even considered me" The relationship with my family was about to go downhill so to avoid future problems I decided to let it go. Having never had a kiss or even a night out.
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Comment by: Jim (Medford) Thu., Nov. 3, 2016 at 10:11 pm UTC
Paul. I was brought up,as youself, my father a natiinal tv evangeist. Very conservstive.

I understand that struggle to learning acceptsnce.

Yiu're the best pal!

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Comment by: Jim (Medford) Thu., Nov. 3, 2016 at 10:05 pm UTC
I like Duane's attitude and point of view. Openess of s the best way to create understanding and redce stigma! However, each of we hiv+ folks undeniably, experience stigma. Not always abuse, but our medical circumstance, definitely limits our options if we are seekng a Partner. True ecen among the fairest if the fair.
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Comment by: Neeka (Cambria Heights NY) Fri., Oct. 21, 2016 at 6:53 pm UTC
its very sad and upsetting to know that a lot of people are ignorant about HIV and AIDS in 2016. I use to share an apartment with my Uncle who is HIV Positive and I never caught anything from him and he wasn't tidy at all. I Kept the place clean and germ free so he wouldn't get any germs that may affect his health. We lived a normal regular life as others do that's not HIV Positive so people need to educate themselves about the virus and stop being so judgmental and Google the information About HIV and AIDS like they Google everything else that's really not important.
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Comment by: It's not what u say, it's how u say it: (On your side, RN) Sun., Aug. 28, 2016 at 4:39 am UTC
I get it and I agree. Are these quotes from the folks in the pics.? Either quotation mark or edit grammar instead of transcribe ,it's important info. Hard to read tho.
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Comment by: mike (michigan city,IN) Wed., Aug. 24, 2016 at 9:01 am UTC
Stigma is killing our people-this-HIV/AIDS is an pandemic in small towns-if u don't believe me check out Southern Indiana
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Comment by: Gael (Jackson, Mississippi) Wed., Jul. 20, 2016 at 2:17 am UTC
I had a cousin by marriage that was supposed to be the 3rd person in the US that was reported to have the HIV Virus. He was portrayed in a movie, but I don't remember the name of the movie. I do remember, however, that his ex-wife, her dad (which was my uncle/ and his wife who at first scorned this person eventually had a change of heart and went to visit him on his death bed/ They told him that they forgave him (for running after the lab tech he worked with because he was in love with him) leaving his wife and kids for this man.
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Comment by: Edward (USA) Tue., May. 24, 2016 at 2:14 am UTC
The first case of HIV in the USA was not reported to the CDC until April, 1980
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Comment by: Buster Keaton (San Diego) Mon., May. 23, 2016 at 1:25 am UTC
San Francisco, sanctuary city!
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Comment by: Angel (Sarasota, Fl) Fri., Feb. 26, 2016 at 9:11 am UTC
HIV stigma in my life looks like shame and an uncomfortable pair of heels. I work around a lot of people with the HIV virus. I get questioned all the time ," YOU DONT HAVE THAT AIDS? Do you.
"No I do not " . I am living HIV positive"
The cruel comments and snickering ,,The "Did you hear she has Aids" Complicates my comfort to help others to be tested , to know their status, to take the meds.
However , like a new pair of shoes as you walk in them for a while the process gets easier. My new shoes are being broken in everyday, so I may carry the message and help Stop Stigma.
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Comment by: Thomas G. Haney (Winder, GA USA) Wed., Feb. 24, 2016 at 10:38 am UTC
I only told one friend, and he's really tired of hearing about it!
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Comment by: Carlos (Michigan) Sun., Feb. 21, 2016 at 8:34 am UTC
I was diagnosed as HIV+ in the fall of 2014, this was absolutely devastating after spending the previous 6 months mending a broken heart after a failed 6 year relationship ended. I knew I had two choices, give up or fight to live and I chose to fight. The only thing that keeps me going is the thought that my treatment is helping those working to find a cure do so. I might have to live with this but it doesn't define me or make me any less of a person and sometimes I'm actually grateful for this diagnosis because its made me look at life differently, I finally can stop and appreciate the little things in life I took for granted before my diagnosis. The ironic twist to my situation is shortly before being tested and receiving my life changing diagnosis, I had actually prayed that I would learn to be more appreciative for what I have in life and then I get this. is what it is and I'm going to do something good with this and not just give up like so many people do when they receive an HIV diagnosis.
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Comment by: Csar Guzman (Key West, Fl) Sun., Feb. 7, 2016 at 3:17 am UTC
Thank you for your site. The "Stigma" angle caught my attention while surfing the news. It seems to me that it's not so much the medical or clinical aspect of the virus that bears the stigma as the way it is commonly transmitted: SEX. Our society, in spite of its desire to be "open" about the topic, is still very repressed and considers it as merely prurient and "seedy" whiile flaunting its availability in cinema, television, and commercial advertisement. Our negative or "puritanical" (purposely lower case since it affects various religious denominations)outlook is still quite prevalent when parents still refuse to admit that their "young" off-springs are sexual beings. Most of us tend to forget that we, as well as previous generations, were experimenting with sex in spite of parental caveats, thus the so called many "early marriages" in the past. Once we feel truly COMFORTABLE and POSTIVE about SEX and take it "out of the closet", we can begin to diminish the HIV stigma while promoting healthy self-esteem and lifestyle choices. Prevention will not be sucessful until we feel AT EASE with the SUBJECT at hand. DIMINISH THE "STIGMA" OF SEX AND DIMINISH THE "STIGMA" OF HIV.
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Comment by: Anonymous (New York, NY) Sat., Aug. 8, 2015 at 11:16 am UTC
As a gay man living in NYC, I have a lot of friends who are HIV+. I hear their stories of meeting people that they like, and want to have relationships with, and have it all vanish as soon as they are honest about their status. I think it is a very anguishing position to be in. The stigma of HIV is suffocating for them, so some of them have stopped talking about it all together, with me or their sexual partners. They are having unprotected sex with people and think its OK because the other person "doesn't ask so fu#* it". This is a very dangerous and vindictive response to their anxieties and experiences with the stigma of living with HIV. Also, HIV drugs may be doing as much harm as good. "I'm undetectable" does not give you the right to have unprotected sex with whoever you want and think there is no risk of transmission. "I'm all Prepped" doesn't mean you can do whatever you want with no risk. Everybody seems to think that it does. This is a dangerous time in the fight against HIV. Education is critical.
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Comment by: leatherman (SC) Mon., Mar. 28, 2016 at 5:56 am UTC
the PARTNER study (with over 767 couples performing nearly 100k sex acts) has proven that the risk of transmission for an undetectable HIV+ person is zero.So there is no "thinking" there is no risk of transmission; there is "knowing" that there is no risk. You're right, education is critical

Comment by: Dann V (San Marcos, Tx) Sat., Jul. 25, 2015 at 5:33 pm UTC
I've had to deal with a lot of stigma and people use it against you, especially the ones that don't like you. Had a friend who tells my boyfriends (past and present) that I am poz and they should beat me up cause I didn't tell them I was poz, all because he THINKS I had sex with his lover. Have a cousin who will go out of her way to tell anyone and everybody (including my mother) about my status just because I don't let her extort money from me to fund her drinking and drugging habit and generally she dislikes me because I am better off then her. (and some others who are into drinking and drugging) These people delight themselves in telling people that I am going around full of aids giving it to eveybody etc. Their friends that know me come to me and tell me that they were embarassed to be told this in the middle of the grocery store and had to "get away" from them. So now I rather not disclose that information to people who are going to use it against me and if you live in a small community I believe it is better that way.
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Comment by: niky (world) Fri., Mar. 27, 2015 at 6:56 am UTC
Disease death stimga lies close doctors dont tell patient they postive aids clinc lies why patients get aids test hostipal let patient down by lies of aids lack of treatment aso clinc refuse treatment of free gov care stimga is big thing for system to destory hiv turn to aids
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Comment by: gary (ct ) Thu., Feb. 26, 2015 at 9:01 am UTC
just one more thing . more or less a question .can anyone suggest support groups in the hartford ct or springfield mass area?
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Comment by: gary (ct ) Thu., Feb. 26, 2015 at 8:51 am UTC

why is it that everyone that gets hiv has to be gay ? does the virus understand this ?i know women who have gotten hiv from there husbands and children born with the disease .so then why dont doctors take take it serious for women and children as well.seems like getting diagnosed is the hardest part .you wouldnt think that health care professionals would add to the stigma like they do .
certain drs put guilt trips on me while i went through sero .they should know better than to lay blamespecially at a time when your world is crashing around best freind made fun of my wasting because my belly looks big now .he says you cant compare this to having a bad back with psyattica .we are no longer doctors told me i was not contagious now my son shows symptoms in his blood work and physicallybut drs dont want to test him because he doesnt have sex with gay men at 8 yrs old.well if he was born with it then shouldnt he recieve treatment.i just dont understand how being exposed to the virus repeatedly or from birth or from prostitutes or drug users is any different then being exposed to it from a gay man .i understand certain types of exposures are less common but viruses dont know this .
drs blew this thing off ten yrs ago if i had known back then my wife and son would not be infected now.
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Comment by: DAVE (MYYRTL POINT OR) Thu., Feb. 19, 2015 at 7:13 pm UTC
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Comment by: Reggie Dunbar II (Atlanta GA) Mon., Jan. 26, 2015 at 3:47 pm UTC
GREAT information to share awareness about hiv-aids stigma especially self stigma.

Thanks for opening the minds, ears a d leasing the fears with those infected, affected and allies.
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Comment by: DAVID (myrtle point or.) Wed., Sep. 10, 2014 at 9:19 am UTC
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Comment by: Natalie Wright (New York) Sat., Oct. 5, 2013 at 10:52 am UTC
I am a 68 year old Black lady who has loss everything. I have HIV
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Comment by: Jack (Las Vegas) Tue., Aug. 6, 2013 at 6:56 pm UTC
For almost half of my life I have been positive. I tested positive in 1990. Diagnosed with full blown AIDS in 1993. I could be the poster boy for the AIDS OI's. I have had just about everyone of the at least once, if not twice.

In my life, I ran into the stigma attached with being HIV positive in all areas of my life. From dating, medical professionals, friends and family. I have had dentists that did not want to treat me. Which precautions with me are no different than with any other person. To doctors and nurses that covered up every inch of their body with latex to treat me.

I have had friends that did not understand the I was sill the same gay guy that I always was. Just now I had health issues. Part of my family chose not to ever speak to me again. Being gay was bad enough for some of them. But being HIV positive was more than they could handle.

Pharma staff that would not even try to find the newest medications on the market. Sometimes I go the answer. I do not know what this is so I can not get for you.

Dating, well that poses it own challenges. When do I disclose? How and what do I say.

All I can say after 23 years living HIV positive is I have learned a lot about people and life.
Many of my friends are gone. I am still here. Trying to make it all work. Being a long term survivor at 51 has been more than interesting. In life, you make it work for you. Even when the part of the world does not make it easy for you to survive.
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Comment by: John J (Philadelphia, PA) Thu., Aug. 1, 2013 at 2:11 pm UTC
HIV stigma is an over riding part of my life. Because I am a surgeon and did invasive procedures, the government wanted me to leave my profession. At the very least, disclosure became mandatory at the behest of various surgical specialty boards. Once patients know you are poz, who is going to continue coming to you? For me it meant giving up the profession I had trained 16 years for. My friends were a mixed bag and I knew many I could not tell. Sexual partners are few and far between. The only respite from that is on HIV sites like Voltage. My partner left me. I can't afford to live on disability the way I lived when I was working. I have found the straight world to be a lot kinder than the gay community regarding my status. I suddenly went from me to a "dirty" person as poz people are called in Philadelphia.
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Comment by: Ivan V Sanchez (Seattle, WA) Wed., Aug. 7, 2013 at 2:30 am UTC
I have been HIV positive for over 30 years and I have been treated by several doctors who are poz as well. As soon as you overcome this stage of self-pitty, get to work helping a community that needs you! There plenty of doctors who have continued been productive after diagnosis. You can become one of those who are making a difference. Just try!
Comment by: Billy (NC) Wed., Aug. 7, 2013 at 1:55 pm UTC
Hi John, I wish I could find a P.C.P. or any Dr. that was in the same boat as me. Not wishing this on anyone, but I would have no reservations with a + doctor.
Comment by: Bryan (Wenonah, NJ) Thu., Aug. 15, 2013 at 5:34 pm UTC
When people ask me if I'm "clean," I respond "No, I only dust once a month." Definitely check out SINPhiladelphia! This is a great social group for HIV+ guys that has its own Yahoo group.

Comment by: Shirley Hilda (Leesburg, FL) Thu., May. 9, 2013 at 2:03 pm UTC
When i was diagnosed 2007 and prescribed Atripla which I still take - my infectious disease doctor was not very positive w/me. I have private insurance and she would after every visit suggest I utilize the community health services also she would never take the time to discuss HIV w/me finally the last visit culminated w/me firing her on the spot when she openly suggested in front of other patients and staff that I would be better served at the community health center because I was just like "those people" w/her voice dripping w/obvious disgust. Fortunately her boss was standing there so when I fired her there was no question the reason why. I then utilized my primary Dr. for everything which took months before he informed me that the infectious disease Dr. office acquired a new partner. When I met her she was a miracle and I just bawled my ass off. She is now my Dr. but because of that awful time I am not very comfortable sharing - I am an introvert and already somewhat isolated and I am afraid to be more isolated than ever.
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Comment by: Patrick (Orlando) Wed., Aug. 7, 2013 at 7:49 am UTC
I certaintly hope that the practice this so called doctor works at has fired her as well.

Comment by: Jim S. (N.E. Texas ) Fri., Aug. 24, 2012 at 1:33 am UTC
I have felt the stigma for 25 years in doctors offices by staff saying we have another one. To doctors and dentist who refused to see me, and mostly by my church, friends. There are no support groups are anything here. Your isolated, persecuted and mostly my children want even bring my grand kids by to see me because they are afraid I will somehow give them something. I've been so depressed, and so angry. Confidentially laws gave me this because I assumed if you tested with someone and paid for their test they would tell you their status. Now it's completely reversed if you don't tell your a felon which I always do tell. My final days on my job were pure hell in 93. I could not believe what my friends I thought were saying about me when I was in a bath stall. Even HEP C does not have the stigma HIV does. Mental issues don't have the stigma. We are not treated like victims we are treated like demons cast from society to live in isolation.
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Comment by: Natalie Wright (Bronx, New York) Sat., Oct. 5, 2013 at 10:48 am UTC
I am a 68 year old female who has HIV. Only my doctor knows.

Comment by: geoffrey n. (Malawi) Mon., Aug. 6, 2012 at 10:55 am UTC
It is those people with HIV that start the game of stima by isolating themselves from other people when they form the so called HIV/AIDS clubs. If we just accept and live as normal human beings, there would be no noise about stigmatisation
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Comment by: Wayne (Sydney, Australua) Tue., Aug. 6, 2013 at 6:50 pm UTC
As a PLWHA long term survivor I find your comment that PLWHA start the stigma, offensive. Please define what you mean by "HIV/AIDS clubs"?
Comment by: John Jones (Philadelphia, PA) Tue., Aug. 6, 2013 at 9:11 pm UTC
I hate to get into a who started it first discussion, but although I have never felt any discrimination from any doctor or dentist, I have it it a great deal from gay friends who don't know. They bring up the question of is he "clean or dirty" whenever someone name is brought up. It is the negative gay community, who once helped us and who now are our worst enemies.
Comment by: Scott (San Diego, CA) Tue., Aug. 6, 2013 at 10:55 pm UTC
Geoffrey, I am so furious with you comment I don't know where to begin. I'll start by saying you must be very lucky to have not experienced any stigma and I hope that you don't in the future as well, but my feeling is you just haven't met the right person or organization or employer yet. I knew about HIV organizations or groups if you will, but I did not full participate or go to any until after I had been discriminated against at work, lost my job, and went from earning $120,000.00 a year to about $6,000.00 plus $200 a month in food stamps which I have to fight to keep every month. For six months I lived with no electric, and no water in sunny California. It is a shame that I am running out of characters so I will let this go because your post is not worthy of any more of my time.
Comment by: Scott (San Diego, CA) Tue., Aug. 6, 2013 at 10:55 pm UTC
Geoffrey, I am so furious with you comment I don't know where to begin. I'll start by saying you must be very lucky to have not experienced any stigma and I hope that you don't in the future as well, but my feeling is you just haven't met the right person or organization or employer yet. I knew about HIV organizations or groups if you will, but I did not full participate or go to any until after I had been discriminated against at work, lost my job, and went from earning $120,000.00 a year to about $6,000.00 plus $200 a month in food stamps which I have to fight to keep every month. For six months I lived with no electric, and no water in sunny California. It is a shame that I am running out of characters so I will let this go because your post is not worthy of any more of my time.

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