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December 1, 2009

How Stigma Kills

by Regan Hofmann


STORIES OF STIGMA

The following are excerpts from some of the responses from readers to our anonymous survey about HIV-related stigma. We encourage you to post your stigma experiences as well.

I told a friend about my status while we were drinking coffee, and when I was done with the cup, he threw it out saying, “I will never drink out of that cup again.”

*
When I was first going on disability, I had a doctor who was doing the intake come in the room in full hazmat suit and mask and gloves. His nurse wouldn’t even let me face her. I had to sit at the opposite end of the exam table to talk to her—and face away.
*
I told [one] employer [about my HIV status] because I was out sick for four weeks. I will never tell another employer because I work total white collar and there’s no threat of blood [exposure]. I don’t volunteer for CPR training or participate in blood drives at work.
*
When I told a very good friend of mine (we used to camp beside each other every weekend), he cried and said he would stand with me, support me, be there for me. I have never heard from him again, not a call, not even a note or e-mail.
*
A friend in whom I was not interested romantically blurted out in front of a group of people that he could never become romantically involved with someone like me with HIV. My response was not to worry. I wasn’t interested in anyone with chronic bad breath like him, either.
*
A friend of a friend who knew I had HIV disinfected the entire house after I came to pick my friend up to go out. When I walked back in a few hours later to drop her off, I noticed the whole house smelled of cleaning products.
*
I feel the stigma is HUGE, and out of the fear that my children would face repercussions from teachers, friends [and] other parents, we have decided to not tell anyone.
*
I am a nurse by profession for 20 years. I told HR the day I found out my HIV status [and] was put on administrative leave immediately and not called back or offered another job. [I had] impeccable credentials.
*
Having hemophilia, I was hospitalized last year for problems not related to HIV. A couple of nurses’ bedside manner dramatically changed after they learned of my status. One actually never returned to my room. I was not spewing body fluids, so she was in no danger. She despised me for being positive.
*
A lot less of my phone calls are answered. People [who] I thought were [my] friends are too cowardly to stare something serious and life-threatening in the face—even if that means discarding me.
*
As a husband and father, I have not disclosed my status to anyone other than my wife and of course [my] health care provider.
*
All my Catholic friends whom I’ve know for 20 years all turned their backs on me, started making up lies in my community [and] attacking my character. I can’t show up in public any longer. No one will hire me. I can’t even volunteer. It feels more like they are carrying out some type of top-down orders to stigmatize people with AIDS. Probably from the Pope.
*
As someone living with HIV, I had people who never cared about my illness and worsen[ed] it. That traumatized me and [made me feel] as if I’m nothing. The more I became educated from health workers and support groups, the more I met others who comforted, understood and supported me.
*
I am basically unable to enter into any sort of romantic relationship. [I experience] quite a bit of social isolation—and it’s just so tiresome.
*
First, I’m black; and second, I’m gay. The worst stigma comes from my own community. Black people sometimes make me feel dirty. I just don’t understand, [since] this is killing our people. I could say more, but I’m getting very upset just saying what I have said already.
*
As a sexually active gay man in New York City, [I know] there’s still a lot of stigma against positive men. It’s tiring and depressing and makes me less willing to disclose my status. [I] even lie about it sometimes.
*
HIV stigma has ruined my life, my career, my family, my finances, my self-respect and my credit.
*
Formerly close friends suddenly lose touch; people don’t want to know you. I usually say, “It’s them, not me,” but it’s me who has to deal with it.
*
Doctors won’t accept me as a patient if I tell them up front that I’m HIV positive. Sometimes if I do get in with new doctors and they realize I’m HIV positive, they get mean or mad at me. People have made me wipe down everything I’ve used or touched with bleach. Living in a very rural redneck area of Florida, I take extra precautions to hide my status. Having gone to the local hospital ER [or to laboratories] for tests, I’ve had nurses drag other nurses or techs in to show me off like a sideshow at a circus. I see so much stigma here from the medical community it’s appalling. Dental care is nonexistent for anyone HIV positive in my county due to stigma.
*
I must either turn a blind eye or tune people out, because I can honestly say in the 20-plus years of being positive, I have never had a bad experience. And I am very open about my status. I have received kindness and support. And I have been able to educate others as a straight, white female (after they get over the shock first—folks don’t think people like “me” get HIV/AIDS).
*
For me it just feels like a very heavy weight I carry all the time. The variety of stigmas still attached to HIV makes the necessity to keep it hidden a burden that’s carried every day. Sometimes it gets very heavy. Rather than jeopardize [your] career, family, friendships and security, you keep it secret. That’s hard to do when you’ve lived an honest and truthful life.
*
I think some of the root cause of HIV stigma is criminalization of HIV transmission. We need more public awareness that HIV-positive people have sex too. I am an openly positive individual, and it saddens me that people living with HIV are so in the closet about it.
*
I had a job working for a well-known law firm in Chicago. When I disclosed my HIV status and my mental illness, they fired me. They said people would be scared to work with me. They said if I sued they would make my life miserable.
*
I got fired from my job as an administrative assistant at my church by my pastor. I lost my best friend of 20 years. I no longer trust anybody. I am in therapy. I cannot date. I sit in my house every day unless I have to go somewhere. My life is HELL.
*
I had a cousin tell everyone I went to high school with that I was positive. I did not go to my reunion.
*
Anonymous phone calls were made to my job [by clients], stating that they were no longer coming to the hair salon.
*
I worked in because I had AIDS. I continually struggle in the dating arena [because of] too much rejection. I know that I cannot get involved with a man with any sort of social status due to my HIV; they do not want to be associated with HIV.
*
Most, if not all, of my negative experiences have been with, by or in the presence of medical or dental personnel. After the disclosure, everything changes. They look at me like I’m from outer space, and the quality of their care reflects it!
*
I found out when I was five months pregnant. I went through a custody battle, and [my child’s] father tried to use my [HIV] status against me, but the judge would not allow it.
*
I dated a man once, several years ago. I kissed him. The next day I decided to share my HIV-positive status with him. He freaked out and said, “They should mark people like you, so the rest of us can tell.”
*
I think one of the main problems I’ve had with stigma comes from myself, being a heterosexual HIV-positive man. It’s hard for me to disclose my status for fear that I will be labeled gay. There still remains so much ignorance toward HIV.
*
I had to sue a former employer for discrimination because of stigma and fear of public disclosure of my positive status.
*
I was removed from direct patient care and placed behind a desk with a “made up” job to keep me busy and away from what I loved doing.
*
I have been asked not to share my water bottle with my 3-year-old nephew.
*
I have been fortunate in the last 10 years to have not received a negative response from anyone I had to disclose to. However, I am extremely selective about whom I share this info with.
*
I think I must be an unusual case, the exception to the rule, but in 15 years of living with HIV, I can think of only one time when I was “rejected” by a potential date because I revealed my status; otherwise, I have never experienced an obvious negative reaction to my disclosing.
*
I’ve been blessed in that I have not experienced any stigma. However, it might be that I was stigmatized and didn’t know it.

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  comments 1 - 15 (of 41 total)     next > >>

Jose, Miami, 2010-01-04 19:01:58
Great article, I have been poz for 3 years. My parents don't know because they will not handle the news well and thats an understatement. My sis, close friends all do know and are VERY supportive. I am very selective who I tell because of the stigma. My coworkers don't know. Reality is the stigma(mainly fear) is still out there alive & well. What's sad is being a gay man the worst discriminators have been other gay men - so much for community.

Rural Loner, Iowa, 2010-01-01 01:40:28
Try living in Iowa with one of the harshest criminal codes for Criminal Transmission of HIV. Conviction requires no infection. Nondisclosure will do it. Then when out of prison... a class B felon, lifetime sex offender with polygraphs every six months indefinitely, GPS bracelet for 2 to 5 years, registry required every three months, multiple rehabilitation classes and psychologist sessions... and a pessimism of one's future... socially, professionally, emotionally, romantically... How's that?

David John, San Francisco, 2009-12-21 21:55:18
I guess I am lucky to live in San Francisco. I have only been poz 2 years, and have not experienced this, but I am selective in whom I tell. So far only a few close friends. I have not told my family because they could not handle it, nor acquaintances because I don't want to be known as the guy with HIV and treated differently. I always tell anyone with whom I may have sex and have been rejected lots of times, but that is OK, because I understand the fear. I was the same until 2 years ago.

Denise, johnstown, 2009-12-19 03:26:25
Well why i have surrendered to always acknowleding that i am positive and it is a great stigma.I did not the mention of the embaressed children who have grown up knowing this lost a lot of people I thought were my freinds .My thing is that i had to not mention as much for the grandchildrens sake they dont understand and neither would their freinds, so whats a Nana to Do??????

Nick Nicholas, Jackson, MS, 2009-12-15 14:38:07
I agree that HIV stigma kills. Being part of a support group helps. But having an ignorant sister-in-law that won't allow me to have any contact with my niece because she's afraid I will give her AIDS does hurt. It makes me angry. The rest of my family has been very supportive though. When I was 1st diagnosed w/AIDS in 2007 my first thought was what it could mean for a LTR of 6 years. He said, "AIDS is something you have. It is not who you are!" We're still together. I want the t-shirt, too!

Blaine, Dallas, 2009-12-03 21:31:37
The only blessing with HIV is that you find out who really cares about you. The ones that drop you never deserved your time, they wasted your time and now just be thankful they are out of your life!

Mary Berry, san jose, 2009-12-03 15:28:30
When I was first diagnosed I didn't think much about who I told. I had about an 85% so called friend drop out rate. Since then I am much more discreet, but I haven't had much luck in relationships. As soon as He is told, He is gone. It has really taken a toll on my self esteem.I don't have much hope in finding a life partner. I smile, and put on a brave face but I would like to believe it possible for falling in love one day. People try to be P.C. but in reality, stigma (ignorance) abounds.

Preciuos, UK, 2009-12-02 11:45:42
When i was diagnosed positive 4years ago, i was devastated and wanted to talk to somebody.I disclosed to my best friend of 23 years friendship, she was like my elder sister, but that was the biggest mistake i made, the news of my status went like wild fire.I started feeling uncomfortable in company of others as i didnot know who knew or not. At the moment i have no friends, feel isolated, i have no courage to disclose to my family.I donot do dating in fear of rejection. Its a lonely life.

Angelo, , 2009-12-01 11:58:00
Changing careers a feww years back, I realized that working in HIV Organizations was not the same living in the outside world. Now I work in public health .. I personal now know the feeling of loneliness and how hard it is to not talk about your statues .. I do know this "We are loved and we have each other" stay strong and never let anyone make you feel bad !

iampoz, nashville, 2009-11-29 20:14:24
I was diagnosed as HIV+ in 2005. I have told my family and a very few close friends. Its sad that my sister & mother dont want me to tell anybody because they're afraid that people in the small town they live in wont want to hang out with THEM...because they have a "positive daughter or sister"!!!!!!! It really hurts my feelings that they feel this way. Shouldnt it be up to me as to whether or not I wanna tell people or not?

loca, , 2009-11-27 10:25:40
pozinpa do not be discouraged . In America you have over 70 million adults and after 20 years of age, each of us has an average of 21900 days to live, with or without hiv. If you were to use each day in the 21900 days to meet each adult in America to ask for their love, you see that you would only meet 21900 adults out of 70 million of them. That is not alot so I encourage you to go out there and search for a partner. Always disclose and wear condom for sex as usual. Catch the love if you can

Jerry, Saint Petersburg FL, 2009-11-24 21:32:29
There is enough stigma between syraight and Gay people. Tere is I know for a fact that there is alot of stigma in the Gay community.Especially if you are stricken with Aids and lipoatrophy/Facial wasting has gotten the attion from gay's and straigts alike.I could talk all night about this.

Dave, Vancouver, 2009-11-24 13:19:47
If I said today that I wouldn't marry some one with hpv it would be because i don't love any one with hpv today, that I know of. How many of us would say today that we'd marry some one with down syndrome, or even be their friend for that matter? Please be carefull when talking about other groups of people. Stats can be twisted in many ways to achieve agendas such as funding, and when you see them compartmentalizing groups of people I ask why the us and them approach?

Dave, Vancouver, 2009-11-24 13:17:19
If I said today that I wouldn't marry some one with hpv it would be because i don't love any one with hpv today, that I know of. How many of us would say today that we'd marry some one with down syndrome, or even be their friend for that matter? Please be carefull when talking about other groups of people. Stats can be twisted in many ways to achieve agendas such as funding, and when you see them compartmentalizing groups of people I ask why the us and them approach?

Frederick Wright, Tampa, 2009-11-23 11:33:08
After 20 years of being HIV positive and hiding in shame for many years I now say to myself get over it, if you can not talk about sex or HIV I am sorry for your closed realty in your life and kiss my ass, if you don't like either. For I going to live, love and have great sex and if your little opinon is shame,shame on me .. Back to you for I am free and no need to hide in shame every day for it is better to fight for honor ,than hold my head down in shame.. No More Shame... NO more Guilt,

comments 1 - 15 (of 41 total)     next > >>


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