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Don't Ask, Don't Tell! Thoughts on HIV Disclosure

By Lynda Arnold

July 3, 2013

The concept of disclosing one's HIV status is something that can bring much fear and pain to a person infected with HIV. There are many scenarios that really deserve to be addressed in any mature discussion on disclosure of HIV status. Most people immediately and rightfully so think of sexual partners and their need to know. The CDC and Departments of Health require anonymous reporting so that sexual partners can be tested and the risk can be disclosed. When I think of disclosure issues however I think of friends, family, coworkers and medical personnel who all may have a need to know one's HIV status but not necessarily a right to know.

For me the disclosure to my sexual partner was far from easy but it was necessary. I was only with one guy at the time. I remember calling him on the phone after I had left the Employee Health Office on Apr. 7, 1993. The nurse had asked me who I wanted to call to come get me because they wouldn't let me drive due to my emotional state and I had told them to call my best friend and roommate at the time. She came to pick me up and with my permission the Employee Health nurse told her about my test results and as she cried, she cried with me. In fact we were all crying.

Then she took me home and I called Tony. It was an extremely difficult phone call to make but somehow I got through it. He insisted on driving up to see me; he lived about two hours away and was stationed at Dover Air Force Base. He consented to getting tested by the Employee Health Department and fully cooperated with anything they needed. To this day 19 years later he is still HIV negative and he remembers the day I delivered the news to him as one of the most emotional days in his life. He was scared, clueless and lost in a fog of uncertainty and fear.

The next people I had to tell were my parents. They too lived about two hours away and I opted to tell them by telephone. My mom and dad were together on the speakerphone. I hadn't told them about the needlestick injury so I had to start at the beginning and tell the full story and that itself was particularly cumbersome and taxing for me. My dad, whom I love, asks a ton of questions and can keep you on the phone for hours if you allow it. I tried to answer everything as best as I could. My mom was quiet and pensive. I knew her questions would come later.

I don't remember crying when I told them the news but I do remember asking them not to tell my entire extended family right away. We have a large extended family on my father's side and it seems that everyone knows any significant health news even if we don't really know that particular cousin or aunt. They agreed to hold off but I did give them permission to tell my four younger sisters. My parents insisted on coming to visit me soon and I accepted that arrangement.

In these days we didn't have email or cell phones -- yes I know shocking right?! -- so, I did have to decide how and when I was going to break the news to my friends and coworkers. Word had spread through the hospital and there were all kinds of untrue rumors and people were confused and my friends particularly needed some clarity. I have always been a control freak and I wanted to be able to control how this news was shared but I couldn't envision going out for the night or to lunch and in between casual niceties just saying "Oh, by the way, I turned HIV positive -- could you pass the salt??" No, I had to come up with a plan; it was important to me. I was in my 20s -- my friends meant everything to me. So Brenda, my best friend, was the conduit. She agreed to tell all our closest friends and she did so one by one. She bore the burden for me. She painstakingly told the story and wept with them and educated them and helped them to see that I was normal, not something to be scared of, that I was the same person, that I bled the same, cried the same, hurt the same and now more than ever that I needed my friends! She was a true best friend in every sense of the word. She helped me and guided me and protected me all within an area and an uncomfortableness for herself that she didn't understand. She had no prior knowledge or experience in HIV. This was all brand new to her. To this day I will never forget that love and support. It helped shape the rest of my journey.

I followed that pattern of using a friend as a conduit throughout the rest of my life and still use it today. I never became comfortable in face-to-face disclosure of my HIV status. That's pretty strange considering that I've been a guest speaker on some of the world's largest stages but yet, in intimate one-on-one conversations, I found it really hard to discuss my personal situation. As the years went by I mostly relied on email or did use a friend to tell others. I was always making decisions on that need to know basis.

The people I have told generally fit one or more categories for me: they had children and I had been intimately involved in those children's lives (i.e., ate in their home, slept over, etc.), or they were my coworkers and/or employers and it was possible that they would find out through some Internet search on their own, due to my public presence since I had become so public for so many years while helping move that needlestick legislation along to its passage. In all cases, I felt like my disclosure was actually a protection for me. I needed safety, coverage and support and while I knew that I risked losing that person as a friend or confidant, I also knew that they needed to know because if they found out through any other channel they wouldn't trust me and that was worse in my eyes. At least if I controlled the disclosure, I could educate them and help them see clear to a higher level of understanding and we could all win. I gave those friends the power and authority to tell other friends whom they felt had the right and/or need to know. This allowed my chosen friend to decompress and release any fear or anxiety or confusion or sadness outside of our friendship and kept me somewhat sane and optimistic. It gave my friends the control they needed without taking any control from me.

I have been very lucky because following my own formula I lost very few friends due to my disclosure. That makes me pretty happy in retrospect. The only downside is that at times I'll be thinking OK, so so-and-so knows and so-and-so and -so, etc., etc., but then I lose track because I'm not the person handling the communication, so I get lost in this sea of people who I think know until one of my chosen friends says, "oh yes I told so-and-so." Sigh ... it's a little hard to keep on top of it but it does work!

Disclosing to medical personnel however has been an entirely different ballgame! Through the years, I have tried to apply the same principle of telling a professional on a need-to-know basis and I have filled out my health history forms accurately. I have had several instances of discrimination over the years, primarily by dentists and gynecologists. I have been refused care once they found out my HIV status and most recently it has happened with an ophthalmologist. In all cases I needed certain treatments -- wisdom teeth removed, colposcopy, cataract surgery -- and in each case the physician argued once they found out my HIV status that the service was no longer needed. In all cases I have gotten a second opinion and in all cases the services were later performed or are scheduled to be performed.

This treatment is particularly annoying because through the years I have really questioned whether or not I should be disclosing my HIV status on those medical health histories. As a health care worker I know the risk to them is so minute; yet as an HIV occupationally infected health care worker, I feel like I have a multiple personality disorder to even allow myself to think like that. Umm, hello, I have HIV from a needlestick injury!! The risk can't be that minute!! Uggh!!!! Anyway, I do believe in full disclosure but I also believe in being smart and sticking up for oneself and not taking no for an answer. If we don't advocate for ourselves then who will???

Disclosing one's HIV status is such a personal decision. I don't think there's a right or wrong way to do it. My family eventually did tell all the extended family members and, believe me, that support in prayers alone is nice to have. Even though I was so worried about the pressure of it all, it paled in comparison to the public attention I received in 1996 when I went to the national media with my story, so my needs regarding disclosure changed through the years and they keep changing even today. Doing this blog is a way of disclosing for me yet I'm not public on my own Facebook page. It's a contradiction that I am living with and a risk that I am taking but one that I feel comfortable with because I know from my previous disclosures to friends and acquaintances that I have enough people out there who have my back.

There are definitely a few people who I wish I hadn't told because even today the way they react to me now makes me actually uncomfortable. They treat me differently and they just aren't comfortable with me and the disease progression, especially now with my neurocognitive issues and the AIDS dementia diagnosis. It makes me sad because if I had another disease like cancer or Parkinson's, I think they would treat me differently. I think they would educate themselves and they would be not only more interested but they would be more compassionate.

So, I do think one has to decide carefully who, what, when, where and why is disclosing your HIV status important and necessary? In answering those questions you can find the truth and decision for yourself. Even as goals and situations change and ebb and flow over the course of life and its transitions, it will allow you to be true to yourself. That's the most important part. Self truth is what matters most. This is your disease, your body, your feelings, your relationships. No one but you can decide where disclosure begins or ends.




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