HIV: nothing about us, without us

I am almost at peace with HIV. I am used to my reality. The “why me” days are over. The timing is never right, as transmission is never intended. It's been ten years and now, for the first time, I will attend this conference as an openly positive woman...

Andrea von Lieven
15 July 2010

2010, a number, balanced and round.  It represents my life and HIV:  The 20th year of active involvement in HIV prevention research and my 10th year of living with HIV.  A few years back I would have prefaced living with HIV with the word “sadly”.  I no longer feel that way but am still tempted to use words like  “unfortunately”  when disclosing to friends I have known for a long time.  As if that word changed anything!  It simply reflects my need to ease their surprise, their reaction.

While coming to terms with my HIV, I changed jobs. I had worked on observational studies in HIV prevention research. I felt bad; prevention had failed me, despite having access to all the information. I decided to move into HIV preventive vaccine research at the International AIDS Vaccine Initiative (IAVI), an NGO whose mission is to ensure the development of safe, effective, accessible, preventive HIV vaccines for use globally.  

I found my niche there, working in clinical trials.  After 3 years’ fieldwork, I could no longer remember whom I had disclosed to at HQ.   This seemed an unnecessarily stressful burden.  In September 2006 I had the chance to explain  “why I do this work” at IAVI’s 10th anniversary celebration.  Nothing seemed more fitting. A safe, effective, accessible vaccine could prevent other women from having a similar experience. Yes, I had a point to make!  With emotional support of the true advocates in and around the organization, I wrote my speech. I have always found public speaking difficult.  In nursing school I argued that public speaking training was not necessary. And here I volunteered?  Thank God for beta blockers!  I managed to stand up in front of 250 people and the words came out easily: “Tonight I am ready to tell you, that I, too, live with HIV”. There was total silence in the room.  Even these professional HIV researchers were unprepared for my reality. Nobody ever is. I was overwhelmed by the reaction. Those moments brought the reality of HIV home to all of us.  HIV can happen to anybody. I could not have done anything more liberating for myself. I am “out” at work, I don’t have to hide pills or make up stories.  What a relief!  

This March, I attended a national Positive Living weekend, run by an association of HIV-Positive people. This retreat focused on HIV and employment. In the “disclosure at work” session I told my story. People laughed, describing my outing as the “Litmus test” for my organization. I liked that analogy. My organization passed!  The Positive Living weekend was reaffirming, yet  I was the only woman among 65 men. Where were the 17%?  Our numbers are low, so it is difficult for us to be visible and considered. This in turn increases stigma and prevents us from working together. We spent 3 nights at a magnificent place, safely tucked away in the middle of the woods. I received support, care, love and, despite being the only woman, complete acceptance. I wish this for all of us.  I have already registered  for the next retreat and hope that I can recruit some more women at this week's Vienna Conference

I am almost at peace with HIV. I am used to my reality. The “why me” days are over. The timing is never right, as transmission is never intended. I am perplexed by the stigma that still surrounds this virus. I truly admire all HIV positive people who are “out” and wish that being “out” was the norm and not special. In December 2009 in Germany, there were approximately 70,000 people with HIV. Just over 17%, about 12,000 are women. As a woman with HIV in Germany, I am a minority. Is that why often I invoke reactions of disbelief and sorrow when I disclose my status?  I do prepare for disclosure and allow one-to-one time for reflection and questions of friends when I disclose.  

I worry less about what people think about me - one of the benefits of getting older.  But to be openly engaged in positive activism means taking risks – and then also potentially being  hurt. I am learning to recognize when I can cope with being vulnerable and only then, confront facts backed up by my personal experience. I also respect that others may not want to be “out”, yet may still participate in activism if they so choose.  Because of HAART (highly active antiretroviral therapy) which I prefer to call “fairly active” mostly for the resulting acronym (you may laugh), HIV in Western Europe no longer equals death.  In the “global South”, it still can. I am fortunate. I had 37 years without HIV and by the time I found myself positive, I had access to all that I needed. I wish that this was true for all – wherever they live. In Europe there is still stigma and discrimination. Therefore there will always be people who do not test and people who do not access treatment.

People with HIV can and do contribute meaningfully to society.  GIPA (Greater Involvement of People Living with HIV/AIDS) should be the norm and not just the politically correct thing to do. “Nothing about us, without us”. I work full time. I cannot afford to retire and I am exploring how to contribute to the fight against stigma without facing exhaustion through overwork. IAVI has agreed to dedicate 20% of my time to the Vienna Conference. This is a brilliant example of how employers can actively contribute to GIPA and advocacy. IAVI works on HIV prevention and advocacy, so this fits perfectly. 

In my work,I felt safe to disclose my status. Sadly for most of us, disclosing at work is too risky. Only last year did I first meet openly positive women engaged in advocacy work. It took me over 8 years to meet them. Before then, a few individual women disclosed to me personally after I told them about myself. Those were important moments and mean more than I can describe. These moments touched trust, intimacy and honesty. I hope that we all have those moments.

For the first time I will attend this conference as an openly positive woman. I am both excited and scared. I will attend sessions on new prevention technologies, as usual. This time I will also participate as an activist: I will help to host the Women’s Networking Zone, which I have helped to develop. I will also contribute to the launch of a new European positive women’s network, “Women in Europe and Central Asia Region Plus”, (We Care+).  In this new role I will add to the visibility of openly positive women.  With my colleagues from the German Working Group “HIV and Professional Life” I hope to meet other groups of positive people that focus on visibility in the professional world to address stigma in the workplace. I hope that my active participation in the global village will lead to new opportunities, joining advocacy with my professional life.  But first and foremost I hope to walk away a stronger woman, determined to continue in the fight against stigma and discrimination.

It’s been 10 years and I am getting ready!




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