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Taking the Test: What's Your Experience?

June 25, 2012

Taking the Test: What's Your Experience?

It's been nearly six years since the U.S. Centers for Disease Control and Prevention recommended that HIV screening be a routine part of adult health care -- even for those outside the "usual" high-risk categories. However, it seems that many of U.S. health providers have yet to get the memo -- and it could be costing people their lives.

To commemorate National HIV Testing Day, we asked community members to share their thoughts and stories about their own HIV testing experiences. Read on for responses that are funny, heartbreaking, frustrating, empowering, and everything in between.

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Mary Pepion-Racine

Mary Pepion-Racine, Salish Kootenai College Center for Prevention and Wellness, Pablo, Mont.

I am a product of Indian Health Service, and it was so super-scary going to our providers for an HIV test because our providers knew everybody in the community, and so I was afraid of being judged and looked down upon, and maybe him thinking that I did something that I shouldn't have done. So it was scary, but once it was over with, however, there was no judgment with my doctor and the news didn't get out that I'd been tested, so I felt way comfortable.

Ernesto Dominguez

Ernesto Dominguez, Cascade AIDS Project, Portland, Ore.

When I first asked my doctor if I could get an HIV test -- because I thought it was part of routine testing, which, apparently, it wasn't -- he didn't think that I was at-risk enough, even though I was a youth of color, and I was queer. He knew about the sex that I was having. And even when I asked for it, he didn't necessarily feel that it was appropriate, or that I needed it. He hemmed and hawed and finally, he gave me the test. But what that does is, it doesn't make me want to ask him again. So now I just kind of go to community-based organizations, which I think are the ones that are leading this effort.

If your doctor isn't willing or able to do it, or if you feel uncomfortable talking to a doctor, you can always go to a community-based organization, like Cascade AIDS Project, and get a free, or a confidential, HIV test.

Female

Female, Northeast U.S.

I've been mired in the U.S. immigration system for quite a long time. While applying for permanent residency (aka a greencard, which actually is once again green-ish), I've had to have several fed-mandated physicals. Prior to Jan. 4, 2010, having HIV infection made a foreign national inadmissible to the U.S., so physicals used to involve getting tested for HIV. Now, being tested for HIV so it can be used against you during the immigration process is wrong, and I'm glad it is no longer allowed. However, because it was routine, getting it done was actually OK -- there was no embarrassment or discomfort as there is when I have to be the one to ask my primary care physician to test me for STDs, including HIV. I look forward to when HIV testing will be offered by all primary care docs as part of a normal checkup.

Kimberly Parker

Kimberly Parker, AIDS Behavioral Researcher, Denton, Texas

My last HIV test was at a health fair -- to prove a point, since I was there trying to convince people to get a test. I thought it would be best if I did it as well, and then said, "It's real easy! It's a mouth swab!" There were two older women. there, and I was like, "Why don't you go get an HIV test?" And they were like, "Well, no, because, you know, I'm not doing anything." I said, "Well, get it so you can tell other people about your experience getting it." And they pretty much looked at me and walked off.

Marguerite Thorp

Marguerite Thorp, Student Global AIDS Campaign, Boston, Mass.

I was a student until last year, and so I was at university health services. It was a pretty streamlined, routine, kind of impersonal process. The interesting thing about it was that I could check my results online. I think I was even sitting in class when the results came in. It was this kind of surreal moment of, Aaah; I could take a deep breath, because I was negative. But it was really interesting, to have that moment surrounded by everything normal in life.

Ronnie Grace

Ronnie Grace, Community Health Worker, Milwaukee, Wisc.; Diagnosed in 1987

My experience was one that I wouldn't want anyone else to have. I got a phone call, letting me know that I had tested HIV positive, and to have a good day.

Dr. Monique Howard

Dr. Monique Howard, New Jersey Women and AIDS Network, Trenton, N.J.

As women of color, we tend to take care of ourselves last, and so getting an HIV test makes me think of me first. For that, it's very empowering. Yes, you sit down and you evaluate what it is that you've done over the past year. But it's about taking care of myself and respecting me enough to put me first.

Daniel Peixoto Irby

Daniel Peixoto Irby, Medical Student; Berkeley, Calif.

A response I got once when I was in my teens/early 20s: "No, you look healthy." Seriously!!!

Kellee Terrell

Kellee Terrell, News Editor, TheBody.com; Brooklyn, N.Y.

Getting tested for HIV had been a difficult thing for me in the past. On one hand, I was terrified of knowing my results, so for years I didn't get tested. But one time around five years ago, I got up the nerve to bring it up when I went to the gyno, and she asked me in an accusatory way what was I doing sexually and that I didn't seem like the kind of person who would have HIV. Needless to say, I didn't get tested. But now, I have an amazing doctor who tests me for HIV along with other stuff like cholesterol levels, vitamin D levels, etc. And I never miss a year of getting tested.

Paul

Paul, NYC Department of Health and Mental Hygiene, Condoms and Materials Unit; Brooklyn, N.Y. / Barbados

I've had the same doctor for the past 15 years, and never once has he ever asked me if I wanted to take an HIV test. So one day I asked him. I said, "Doc, why've you never asked me to take an HIV test?" He said, "Well, I know what you do. You're from the Department of Health, so if you want to take the test, you know how to take the test." I said, "That's an assumption that is highly overrated. Isn't it your job as my doctor to ask me, regardless of what position I have?" And he was like, "You're right." So he did ask me to do the test, and I did it. But it was just a funny thing. I just wanted to just kind of push that with him, as to why he never asked me.

Janine Brignola

Janine Brignola, Hope's Voice, Omaha, Neb.; Diagnosed in 2006

I have had wonderful experiences when getting tested; even the test that came back positive was at first a positive experience, no pun intended. Then, before the results of the positive test came back I was treated horribly and eventually informed over a phone call, which if you don't know is illegal. Prior to the positive test I had had only one negative response when I asked for a test, from the actual doctor whom I had been a patient of for some years -- which is why I started going to the city health department, and all of my experiences there were beautiful because of the passion, compassion, and beauty of the staff at that facility.

And yes, that doctor, the one whom I had seen for many years, told me that I didn't need "one of those."

Adam Viera

Adam Viera, Harm Reduction Coalition, New York City

When I was in graduate school, I asked my doctor at the time, who was affiliated with the university health center, for an HIV test. It was a regular six-month HIV test. The doctor was actually trying to dissuade me from getting the HIV test. He kept telling me, "Well, you don't engage in any high-risk behaviors. Latino gay men are not really at that high risk."

But then he started backtracking and saying, "Actually, I guess that there are certain high-risk populations of Latinos in New York. So maybe you should get the test . . ." It was this interesting back-and-forth, where the doctor was almost using epidemiology to determine whether or not I should be getting an HIV test. So it was a very interesting experience, to say the least. I was very adamant about getting the HIV test so, in the end, he did give it to me.

Brian Robert

Brian Robert, AIDS.gov, Fairfax, Va.

I have not had that experience. I have never been tested. I guess it's never been a concern for me. I've only ever had one partner, and we've been together forever, just the two of us. It's definitely more on my radar now that I've worked in the HIV field than it ever was in the past.

Mercedes Gibson

Mercedes Gibson, Rainbow Community Center of Contra Costa County; Actor, Dyke Central; Oakland, Calif.

I got an oral test one time at the hospital and the nurse forgot to give me my results. When I asked her for the results she gave them to me in the lobby -- in front of everyone.

Audria A. Russell

Audria A. Russell, Women in Need; New York City

I always do my very best to practice what I preach as it pertains to HIV prevention and education: I talk, host and plan various forums on HIV prevention in New York State, and most important I encourage as many of my family members as possible to get HIV tested. I was extremely proud and happy when my sister shared with me that she decided to get tested for HIV after attending an HIV prevention event with me! But, interestingly, for a long time I never got tested because in my mind I was not at risk for HIV infection. However, in 2007 my excuses ended, when my friend and colleague Ann (not her real name) asked me if I was ever tested for HIV? I told her a delayed "Nooooooo, but I will get HIV tested at my next appointment with my health care provider."

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Becky Allen

Becky Allen, Site Manager, TheBody.com; New York City

My first HIV test actually came at my doctor's suggestion. I came in for my annual GYN appointment and my doc basically said without preamble, "OK, I'm going to test you for HIV, herpes, Chlamydia, syphilis, the works."

I had a moment of, "What exactly do you think I'm doing in my sex life to need all that?" And I should know better -- doctors should be doing the full run of tests, and suggesting them isn't judgment. (In fairness to me, I'd barely started working at TheBody.com when this happened, which was eye-opening for me in general. Hopefully I've quelled that internalized stigma a bit by now.)

(And bonus experience from that day -- I'd worked at TheBody.com just long enough to know you can do rapid oral HIV tests, which was what I figured she'd give me. I was extremely disappointed when she pulled out a needle instead, because owwwww.)

Hawa

Hawa, Health Worker; Bronx, N.Y.

At my GYN's in May of this year: "You know, I could do one of those, but it's a blood test you know, so I'd have to draw blood."

At my rheumatologist's last year, in the process of getting diagnosed with another chronic immune disease: She is ordering tests for TB, hep C, Lyme disease, lupus, Sjogren's syndrome, etc., but no HIV. I bring up HIV, and she responds, "No, that won't be necessary."

Mackenzie S.

Mackenzie S., The Damien Center, Indianapolis, Ind.

My first HIV test wasn't until college. My tester was so lovely and nonjudgmental that I decided I wanted to reach out to people, too! I'm now employed at an AIDS service organization and (you guessed it!) my tester is currently my supervisor. I use the same open, judgment-free, knowledgeable approach that Rashida used with me and so far our clients have been happy to know their status.

Hana Hawthorne

Hana Hawthorne, Aniz, Inc.; Atlanta, Ga.

For me, taking a HIV test is like being on one of those game shows and the person giving the test was the game show host. I took my first test at a health fair in college. Before the test is administered they asking their routine questions, and for every question I answered "no" I felt like I added $100 into the pot. For every question I answered "yes" it took $50 out of the pot. The test was simple and painless but the biggest issues happened after I left the testing room. Sitting there in the waiting area the big debate started in my head: What if I was positive? How will my family react? How will my partner react? Does everyone in this office know I just took the test? Being on the game show would have been better, but I'm glad I faced my fears.

Olivia Ford

Olivia Ford, Community Manager, TheBody.com; Brooklyn, N.Y.

I went to a gynecologist and was given a form to sign acknowledging that I had been offered an HIV test, been made aware of and counseled on my potential risk factors, etc., so obviously they were either independently conscientious or aware of CDC's recommendation around HIV screening in health care settings. I signed the bottom of the form, assuming I was about to get my counsel on with my groovy, CDC-compliant new GYN. Lies! She did not say a single word about HIV or that form throughout the entire appointment. Providing a form telling people they'll eventually be offered an HIV test does not replace actually offering the test. Checking boxes on a form doesn't equal knowing your HIV status and, if needed, getting into care!

Analyst

Analyst, Washington, D.C.

I got a test when I was about 21.I went to an anonymous clinic, and they were so sweet. It was part of a community health center, and they had an HIV tester. It was the full-on blood draw, and the guy had never done it before, and he was having so much trouble. I'm sure he was legally able to take my blood, but he wasn't particularly good at it. It took forever. He stuck me like three times. He was so sweet about it. But it's funny; I think in a lot of testing clinics sometimes you have really inexperienced people. It's a small town where I was getting tested. It's not like there are a lot of people walking in, asking for a test.

Angela Davey

Angela Davey, Olmsted County Social Service Advisory Board, Rochester, Minn.; Diagnosed in 1997

I first started getting tested every year back in 1987. Back then it was requested that you give a name other than your own. Then you called back over two weeks later to get the results. At one point I remember being assigned a number to identify me. The last time I tested it came back positive. That was in '97. I lived in San Francisco and it was through a clinic. By then it was under your real name and the wait was only three days, and I was told by a case manager who gave me resource info along with the results.

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Skyy Banks

Skyy Banks, Aniz, Inc., Atlanta, Ga.

My first experience being tested was some years ago, and simply mind-blowing. My gynecologist, who happened to be a woman, asked with no hesitation why I needed a test; I was married. Pulling my feet out of the stirrups, I sat up and responded, "The same reason why I need a new gynecologist -- some people just don't have your best interests at heart!" Still I have found that there is nothing routine about being tested for HIV in 2012, especially at the G-Y-N. I ask, it's given, and everybody's good.




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