Coping With a Friend's Diagnosis -- and a Race-Blind Virus
By Terri Wilder
April 9, 2008
March 10th was National Women and Girls HIV/AIDS Awareness Day
. Out of curiosity, I went to the awareness day website to see what events were going on -- what posters they had available, fact sheets, etc. I was shocked! The poster actually had a white female on it, but ... there were no fact sheets on white women and HIV.
Before you accuse me of being something that I am not, hear me out. I am sick of seeing posters that associate this disease with one race. Are we not all at risk for this disease? Why do the majority of HIV prevention posters, videos, etc. only target one race?
Yes, I know what the statistics say, and that we should target our messages to specific communities so that we are being culturally sensitive. However, no one ever targets my community (read: white, straight, female). Personally, I think we are doing a disservice to everyone by constructing posters that represent/target one race. Creating posters that represent EVERYONE seems to be the most logical way to get the message out that EVERYONE is at risk for HIV regardless of skin color, gender, sexual orientation, etc. I mean ... isn't that what we tell people? It is not who you are, it is what you do. Everyone is at risk for HIV, you can't tell who is "sick" by looking at them, etc., etc.
I am sorry if I am coming across as angry, but I am pissed off. One of my girlfriends just tested HIV positive and I am beyond furious. Perhaps one of the reasons she got infected is structural (i.e., no system in place for her to receive the message, no programs set up targeting her, etc.). Maybe she got infected because she has never seen a poster with her face on it and never internalized her risk. Maybe she got infected because in her 39+ years of living NO ONE has ever offered her an HIV test, thus no one has ever talked with her about HIV risk and sexual/drug-using behavior. Perhaps it is because no one has ever explained to her that lambskin condoms do not protect her from HIV ... or because no one has ever talked to her about how heterosexual white women are at risk.
Can you believe it?? The other day she actually told me that she had NO idea that lambskin condoms were ineffective against HIV. And, of course, she and one of her ex-boyfriends used lambskin condoms when they had sex because they thought they were being "safe."
I could not believe it when she contacted me. We have not talked in several years and it was a nice surprise to hear from her. Little did I know that she was contacting me for no other reason than to tell me that she had tested HIV positive. All I can say is thank GOD for The Body website, for without it she would have never found me.
But there is more to the story. My friend doesn't just have HIV, she has AIDS. Her T-cell count is 55 and her viral load is 600,000. I have been beside myself for over a month. I cannot stop crying.
I know I have worked in HIV for 18 years, but this diagnosis has been particularly hard for me. Most of my friends with HIV came to me through volunteer work or employment at an HIV/AIDS organization. They already had HIV when I met them. This is the first time in my life that one of my friends tested HIV positive outside of my AIDS work world.
Twenty years ago, this girlfriend of mine and I would go out to the bars. She was a couple of years younger than me so we got her a "fake ID." I know. I know. ... Anyway, people were always drawn to her. She has such a great personality and a great laugh. She is absolutely gorgeous and I often found myself jealous of her. For whatever reason, we lost touch: She got married ... I went to graduate school ... she had children ... I had many failed relationships ... she got divorced ... and then I got this e-mail.
I cannot stop crying. Every time I think about this it breaks my heart. I can't get over it. After we initially talked, I begged her to get her children tested. Ironically, her ex-husband questioned this decision. I got pissed off at him for being so irresponsible as to question the validity of getting their children tested. I also got pissed off at him for delaying his own testing. Fortunately, the children are HIV negative and the husband says he is negative as well. Three out of four ex-boyfriends have been contacted and we are working on notifying the fourth.
She is on Atripla [efavirenz/tenofovir/FTC] and Kaletra [lopinavir/ritonavir] and has seen about a million doctors in the last month. It will take about six months to figure out if her body is responding to this medicine. In the meantime, I send her every announcement for every HIV-related workshop I can find. I am sure I am driving her crazy! She told me that I am not but I don't believe her.
She is such a beautiful spirit and I can't imagine this world without her. All she ever wanted in her life was to be a mother. I want her to be there for her children. I want her to be there for, well, all of us.
Please dear God, let this medicine work ... Please dear God, let the scientist find a cure ... I just don't think I can take it!
To contact Terri, please e-mail firstname.lastname@example.org.
Comment by: DINA
(STATEN ISLAND NY)
Fri., Jul. 10, 2009 at 11:51 am UTC
HI TERRI, I ABSOLUTELY GOT WHAT YOU ARE SAYING. THE FIRST THING I NOTICED ABOUT THE POSTER IS THAT YOU NOT ONLY CAPTURED ALL RACES BUT ALL AGES AS WELL. I SEE WHAT APPEARS TO A VERY YOUNG GIRL. I HAVE BEEN IN THE SUBSTANCE ABUSE FIELD FOR A VERY LONG TIME AND BECAME INVOLVED IN THE HIV COUNSELING/PREVENTION PORTION IN THE LATE 1980'S. i HAVE ASSISTED TEENS AND ADULTS ALIKE THROUGHOUT THE YEARS, HOWEVER, WHEN A VERY CLOSE YOUNG FAMILY MEMBER BECAME HIV POS, ALL I KNEW FLEW OUT OF THE WINDOW. I HAVE SINCE LEARNED TO ACCEPT AND BE OF FULL SUPPORT IN EVERY WAY BUT I GET THE ANGER AND FRUSTRATION. THANKS FOR THE INFORMATION. I LOVE THIS SITE! dc
Comment by: Robert
Wed., Mar. 25, 2009 at 4:05 pm UTC
People still have not learned, and I don't know why.
Years ago, I ran into a young man, 20 years younger than me, who wanted to meet me.
We did not.
However, for reasons that are irrelevant to this post, I chose to discourage him, so I revealed early that I am POZ.
I made is simple, "I have HIV."
His response: "That's something you can get rid of, right?" and he was 100% sincere!
Here we were, in the 2000's, and a young man who grew up in this Pandemic thought it was curable!!!
Irrelevant data: I'm white, he is African-American.
There, you have your social/race settings.
But the bigger question is, the only question is: WHY are we failing ANYONE AT ALL at this point in time????
Comment by: Terri
Sun., Mar. 8, 2009 at 8:16 pm UTC
Dear Disgusted: I think EVERYONE should stop blaming...including you. Sorry you missed the point of my blog.
Comment by: Disgusted
Tue., Feb. 17, 2009 at 1:28 pm UTC
Terri, I am a little disgusted about what you have said also. I am sorry that your friend has HIV. I don't wish that on anyone, but I am tired of people making excuses about how they became infected. I am blessed to say that because God was on my side I didn't catch this disease when I pricked my finger on a needle while searching through bags while working at the airport. I am a black woman who hasn't been with a lot of people and at the time I was with the man who took my virginity. What if I had contracted anything from that needle and taken it home to the man I was in a monogamous relationship with? People need to stop playing the blame game, and get out of the fantasy world that they live in, including yourself. Stop playing holier than thou and let's fight against HIV and other horrible diseases. Oh one more question, Did my grandmother deserve hepatitis C because she needed surgery to remove the cancer that would have killed her?
Comment by: Pheasant
Thu., May. 1, 2008 at 5:55 pm UTC
I agree. It should be publicized that HIV/AIDS can affect anyone, ANYONE. Sexual health education is my passion. I remember in college being at the "Free Condoms" table, (I was a Sexual Health Peer Educator) and people would say "I'm married, I don't have to worry". It is really sad how people still think only certain people are affected by this disease. "It is Africa's problem", or only gay men and "sluts" get HIV. It is so appalling how misinformed people are. Changes need to be made. Public schools should have comprehensive sexual education. Thanks for your words. You should be angry.
Comment by: Sherri Lewis
Wed., Apr. 30, 2008 at 9:13 pm UTC
Thank you Terri,
At 54 years old, white, positive since 1985 and healthy, thank G-d, I think this is the first time I have heard the same feelings I have felt regarding being left out once again from the pack. First is was gay men only, then HIV drug users, than children, then women, African American women to be specific. As a long time AIDS educator and public speaker I have addressed this issue the way I was taught back in the 80's. AIDS is a non discriminating disease. No matter how much money, fame, race or education, this is for all of us and we all count and she be included in the advertising. That way non of us are missing the message or targeted for discrimination by stigmatizing ourselves. Good for you Terri. It takes courage to speak your out. I know. G-d bless and continued good health. Peace out and within,
Comment by: Terri-the author
Wed., Apr. 16, 2008 at 12:56 pm UTC
To Dennis S. Yes, the poster has a white woman in it. I attached the poster to my blog to show that this poster ACTUALLY had a white woman in it.. which in my experience is unusual...that was the point of attaching it to the blog. I couldn't believe that they actually had a white woman in the prevention poster. Please re-read the first paragraph of the blog. I think you missed that part.
Comment by: Prettyeyes001@roadrunner.com
Wed., Apr. 16, 2008 at 10:57 am UTC
When I was diagnosed in 1997, the only face I remember that was displayed in the media was a white, gay male. When I joined Being Alive to be a HIV speaker and advocate I was the only black in the group, surrounded by white men and 2 white women. When I looked for support groups, the groups were for gay males, and when I did find a group that were majority women quite of a few the women were white, hispanic, black lesbians and/or former drug users and/or sex workers. I did not fit into either group. Being that I am a black female who was only 22 then, I had only met one person like me then.
I point this out to say that times have changed greatly in my opinion. The Oprah Winfrey Show in that reaches out to all women in this country and around the world had several women from all backgrounds on the show with HIV/AIDS in 2006; the poster shown above features women of different races. As a woman if I saw a poster or a commerical that was marketed to women I wouldn't care what color the women were but more importantly what message it was trying to send. Are you saying that if commercials or other forms of media had white women you, your friend and other white women would pay more attention? I think your article helps to widen the divide. (And the reality is if the statistics were in reverse and WHITE WOMEN were the majority of the HIV/AIDS infections in this world; I do believe that the nations across this world would be a lot more energetic about finding a vaccination and/or cure). So let's lose the race card, let's get the message out to everyone and continue to push for a cure.
Comment by: Pat
Tue., Apr. 15, 2008 at 9:32 pm UTC
I am a 56 year old woman who has been HIV positive for 24 years. I have met HIV+ people from all walks of life and from many parts of the world. None of them ever expected to contract HIV. Of course we should all be paying attention and know that HIV is a risk to everyone, but let's face it, we all like to think, "It can't happen to me."
I'm glad that your friend is doing well. Meds have made living much more possible than the old days of a certain "death sentence."
There was no support group for women or for heterosexuals in my community in the 80's. So,a few pissed off, old time activist HIV+ women started the groups. I am the only survivor of that first group.But the groups and the emotional support network still remain. Check out thebody.com women's resources. Organizations like WORLD in Oakland, Babes Network in Seattle, SMART in NYC, Women Rising in Austin, Mujeres Unidas Contra SIDA in San Antonio are just a few groups dedicated to helping women living with HIV.
There are any number of reasons that women of color are contracting HIV at an alarming rate. Those posters need to represent all of us. Let's start asking our local health departments what they are doing to offer safe, non judgemental culturally competent testing and counseling for all women. I bet when asked we will hear a collective,"HUH???"
Comment by: JT
Mon., Apr. 14, 2008 at 11:03 pm UTC
I can understand where she is coming from, those who judge her as being racist are not reacting to what she is saying. I am a male hemophiliac who has been dealing with this for all of my adult life. I too am frustrated that it seems that specific groups get targeted and that often means others get excluded.
I am white, never done as much as smoke pot, do not sleep with prostitutes,never thought about having sex with a male, I work full-time and have a master's degree. I show up to meetings and folks look at me and think I am not supposed to be there as if my race, sexual orientation, or lack of recreational drug experience does not qualify me as needing help. We are all in this boat together. I should not be seen as an outsider anymore than a targeted audience.
I can't find support groups that will accept me, yet there are several around my area. Its frustrating.
Not even the hemophilia community does much as they are afraid it would scare away young families that attend meetings and are needed to keep the organizations going. I'd like to let them know to watch out as if I could get some nasty bugs so can they, but meetings are well scripted so that folks like me have no say.
Comment by: Dennis S
Mon., Apr. 14, 2008 at 9:48 am UTC
Not for nothing, but there are TWO white women in the very poster that appears at the top of this blog. Two out of six. 33% is a much higher percentage than the actual % of white women who make up newly infected people, no? Look, I'm not saying that you're wrong, Terri, and I'm not saying that Deal With It is wrong, but I think your tone in this blog *does* play a race card, since you yourself say you're doing exactly that within your post -- "no one has ever talked to her about how heterosexual white women are at risk." If the point is that nobody in her school or her community ever told her (or she never listened and so does not remember being told) that HIV was a risk for her, then that's the point. Race doesn't come into it. Her community failed her, period. If you were never taught to look both ways before you cross the street and you get run over, it doesn't matter what color you were when it happened. Look, this is a horrible, horrible thing that your friend is now facing, and it's a devastating situation, and I wish her nothing but the best. But there are other diseases than HIV that can potentially be just as deadly and that we DO learn about in school or see on TV or read about casually. Blame lies in more than one direction here. White or black doesn't come into it.
Comment by: Bernie
Fri., Apr. 11, 2008 at 12:46 pm UTC
Terri, I was diagnosed in 2006 with AIDS with a CD4 of 183 and 7%. I was 54 years old at the time. Yes, I knew there was a risk I could get HIV but no one, I mean no one EVER thought to test me. I had sore throats, ear infections, unexplained chest infections, but still not one doctor even considered as a white heterosexual middle class babyboomer with a good job I may have had HIV. I finally got tested when I asked for it (when I presented myself to the clinic with a huge allergic reaction to Bactrim).. and of course its all history from there. About a month ago I was at an HIV hetero social event. The rep from Gilead was there and wanted us all to fill out HIV information sheets for Magic Johnson's program for "African American's with HIV". Our whole table of Poz people were Caucasian or Hispanic. we all looked at each other and said "what happened to us?". So Terri, I am with you; hetero white woman are a largely ignored group. Not only are we not tested, there are not many hetero groups or information geared toward women. Keep up the good work!!!
Bernardine (Bernie), RN
Comment by: Terri-the author
Thu., Apr. 10, 2008 at 10:00 pm UTC
To Deal With It:
It is offensive to me that you would accuse me of playing the race card...and be so insensitive to my friend's situation. After working in HIV for over 18 years, I am very aware of the inequalities related to HIV. Furthermore, my point is that the disease seems to have become ONLY about race as it relates to prevention messages...and because of that we are blind to the fact that our prevention messages are NOT inclusive... ..furthermore, people are not aware that everyone is at risk....I realize it is 2008 but you are really naive if you think people know everything there is to know about HIV/AIDS...by the way...not every person has access to accurate education..maybe your school and community talked about HIV but mine and my friend did not. I had to search out. I am sorry that you mis-read my blog...but my friend still has AIDS and it still hurts...and I don't think I ever said that she SIMPLY got it because she didn't know she could get it... what I did say was that structural systems contribute to who does get it and who doesn't...and in this case... a very huge structure of prevention education was missing... please re-read my blog.
Comment by: Who's asking?
Thu., Apr. 10, 2008 at 7:13 pm UTC
This has been quite an interesting conversation! To paraphrase Hillary Clinton (blackvoices.com/blogs/2007/06/29/notable-quotable-hillary-clinton-on-aids), I am confident that long before HIV/AIDS becomes the leading cause of death for white women in their twenties and thirties, someone in power will sit up and take notice. Before it comes to that, or even near that, white women will have to produce their own culturally sensitive HIV prevention materials and support networks, just as every single other group affected by this disease, in order to address the particulars of HIV awareness, prevention and appropriate care in their communities, has had to struggle and do it themselves. Just one of the character-building pitfalls of minority status. Welcome to it, sisters!
Comment by: Lori
Thu., Apr. 10, 2008 at 5:39 pm UTC
I agree with her 100%.The education for this diease is not really update.Because of this there remains a stigma.Meaning if you have this diease you must be a gay man or a prositute.It doesn't tell you that the diease does not know who you are or where you have been.All it knows is that you are a human host to thrive in.Many Hetrosexaul women are a shamed to tell anyone or even adimitt it to themseleves that they have this diease,as being affraid of being stereo typed.
Comment by: Anne
Thu., Apr. 10, 2008 at 5:06 pm UTC
I am a 58 year old woman, who was pretty naive' about getting HIV?AIDS. I just never really thought I could be at risk, or that my few sexual relationships would be at risk either. They told me they had been tested and were negative. I thought I had nothing to fear, I trusted, and oh boy was that a stupid mistake!
After two years of feeling terrible, and being treated with every anitidepressant know to the medical community, I finally was sent to an oncologist who took an hour long interview with me to come to the idea maybe I should be checked for HIV infection. My heart stopped and my result was positive.
O.K. Seven years later after a viral load of 750,000 and 36 T cells, I am happy to say the medication worked well after the first 6 months, bringing me down to undetectable, and 550 t-cells and holding.
My doctor told me "we are going to turn this around!" and by God we did. So have faith and tell your friend to adhere to the drugs, have a positive outlook, don't smoke and drink very little, try to eat Organic,,, and I just bet you she will be "turning this around" too!
Have faith,,, God is bigger than AIDS....and we all just have to keep the faith, that this can be a livable disease... for all of us,,, and to get some drugs to the poor and neglected in Africa and other countries.
Comment by: Deal With It
Thu., Apr. 10, 2008 at 4:21 pm UTC
Sorry but, this is crap. You're playing the race card, Terri. It's VERY offensive that you would suggest that your friend got AIDS, simply because she "didn't know it could affect her." What do you want? Someone to babysit her? Plain and simple fact: IF YOU ARE A HUMAN BEING, YOU CAN GET AIDS. The information is out there and available to EVERYONE. You can't get upset because your friend was irresponsible. She's a grown woman. And don't blame the advertising agencies for doing their job. The fact of the matter is AIDS affects women of color and "inner city populations" more than any other group. They aren't suggesting white women are NOT affected, they are just representing the majority of women who ARE.
To play devil's advocate, it's the same way a woman of color may feel when she picks up a beauty or health magazine. You may see splashes of color here or there (black, latina, etc.) but mainly WHITE. Women of color are invisible in this section of advertising, which makes up a large portion of media, I might add. For females in Western society, all that is desireable, sexy and attractive resembles the so-called "mainstream" as much as possible, which prettty much means being white. And to take it to another issue just as heavy as AIDS, women of color are BARELY represented when it comes to kidnappings and rapes in the media. Thousands of women who are black, latina and every color in between are kidnapped and raped every year and the stories hardly ever make it to the media. And we all know the media plays an extremely vital role in rape or kidnapping recovery. The same way you feel advertising potrays only women of color get AIDS, you would think only white women are kidnapped or raped!
Comment by: Michael Brewster
Thu., Apr. 10, 2008 at 1:43 pm UTC
This angers me just as well. We really do need to do a better job and making it known that ANYONE can get this virus. It is not limited to a certain race or certain sex orientation groups. Everyone should get tested at least once annually if they are not at high risk. We need to start now and help do a much better job world wide.
Comment by: Charles D
Thu., Apr. 10, 2008 at 1:04 pm UTC
Terri your comment have a great point on the issue that we are victims of HIV. I disagree with you on the way messages are target torwards certain populations. You should try and understand that the same message that works for you may not get my attention to go in for testing. We have to meet each population on their term and what they know and respond to. I am sorry to hear about your friend. Yes everyone is in danger of this virus. Picture this a HIV prevention poster that states and shows a White, Black, Latino, Indian women, which states HIV is rapaidly growing in women get tested or a poster with a Black or Latino women that targets these populations, which states in 2007, 74% of all female reported with HIV infection were members of race/ethnic minority groups. Now consider why it is very important that we continue to do both, but need to target them individually based on the environmental factors that influence or increase their risk for HIV, which may be different for all populations.
Comment by: April Douglas
Thu., Apr. 10, 2008 at 9:32 am UTC
I find it interesting how the blog emphasizes the point of not associating this disease with a certain race, yet Liz commented that the person who she believes infected her was a black man.
Comment by: Be
Thu., Apr. 10, 2008 at 8:54 am UTC
Hey Liz, you start just by reaching out and connecting with others as you are doing.
i am no longer angry but very concerned and dedicated to educating those who are not aware of the risks of HIV and how we are all affected. I am also a middle aged white woman who never considered the possibility of contracting HIV. Diagnosed 4 years ago it has been a sruggle to find support. I was able to find a wonderful social worker who recommended a fantastic support group called Friends Indeed (FID www.friendsindeed.org). FID has turned my life around, providing me with information, free services including medical updates, individual and group counseling, meditation, yoga, nutritional advice and most importantly giving me the emotional support i wasnt able to find anywhere. I am eternally grateful to them.
Comment by: Liz McDermeit
Wed., Apr. 9, 2008 at 9:33 pm UTC
I am just as angry as you Terri. I am a white woman 43 years of age. I never thought I could become HIV +. Diagnosed almost 9 years ago whenI found out I was pregnant. I had a short term relationship with a black man that I thought cared about me. Only to find out he gave me something that would effect me the rest of my life. Also my family is affected also and my twins that I gave birth to 7 1/2 years ago.
I go to womens conferences for HIV women and 90 percent of them are not my race. I do not live in the inner city so womens groups are scarce and there are no meetings for women in the suburbs and it is very aggravating and makes me very angry. HIV is a disease that affects everyone not just a select group of people or cultures.
when are people going to realize that this disease affects everyone no matter their race, age, or whether they are female or male. If you don't live in the inner city then you get left behind when it comes to support groups or help of any emotional support. I wish I could change they way things are but where does a person start?
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Working in the Frontlines of the HIV Pandemic Since 1989
Terri Wilder is a social worker who has worked in HIV for nearly two decades. She has written numerous articles about HIV, and has presented at HIV conferences around the United States. She is currently pursuing a doctoral degree in sociology at Georgia State University.
More About Terri:
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Articles by Terri:
July 6, 2009 - Eight Characteristics of Long-Term Survivors of HIV/AIDS: A Blog Entry by Terri Wilder, M.S.W.
March 15, 2009 - Thoughts About Women and Oral Sex After Visiting the NYC Sex Museum: A Blog Entry by Terri Wilder, M.S.W.
September 25, 2008 - The Death of an HIV/AIDS Organization: A Blog Entry by Terri Wilder, M.S.W.
July 27, 2008 - Standing My Ground With Latex: A Blog Entry by Terri Wilder, M.S.W.
June 12, 2008 - Where Is the Martin Luther King Jr. of HIV? A Blog Entry by Terri Wilder, M.S.W.
Are We Thinking About HIV and Older Adults?
Twenty-Seven Years of Women Living With HIV:
Past, Present and Future (January 1, 2008)
To read PDF, click here
The Hidden Epidemic: White Women and HIV (September 2001)
From AIDS Survival Project
For the rest of Terri's articles, click here.
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The opinions expressed by TheBody.com's bloggers are entirely their own, and do not necessarily reflect the views of TheBody.com itself.