October 2001
FEAR I’m already scared, what’s next...

It's hard not to feel guilty about enjoying the simple pleasures of life, even if they are small conversations, while the lives of so many others are shattered. We may smile or try to carry on discussions, but the reality is that we still carry our own personal feelings around the issues and problems in our lives, especially our fears. I felt this intense struggle at the airport the week of the World Trade Center Attack, when a woman casually started to engage in a conversation about HIV with me.

Last week while standing in a very long line at the airport, a woman started to talk to me, she said, "If it was only me, I'd just go ahead and think about getting tested for HIV, but my child needs me and there is so much craziness in this world, I don’t need to know that stuff right now." This woman saw the red ribbon on my denim jacket and felt comfortable telling me her story. I was numb, not even able to talk about anything, let alone HIV. That is when it dawned on me that no matter where we are, what we are doing and how we are doing something—someone is dealing with the fears attached to HIV.

Despair in women with HIV is fully justified; responsibilities and stress skyrocket when women find out that they or their children or both are HIV+. Many of them are single moms because their partner has died of AIDS or, more often, because the partner has left them. Living with HIV/AIDS is a challenging struggle for survival. Like most women, women who are HIV positive put their own needs second to the needs of their children and families.

Women with HIV/AIDS have had some community services available to meet their needs (at least in King and Snohomish Counties), namely the BABES, Positive Women’s Network and Northwest Family Center. The idea of implementing services for the previously overlooked female seropositive clientele was born at the plight of the epidemic. Thanks to volunteers, trained and supervised by professionals, HIV positive women may benefit from a range of practical social services. Women can receive accompaniment or transport to the many doctor's appointments, baby-sitting services during doctor's appointments (and while women are adjusting to new medications) and many other services that promote accessibility to and maintenance of a course of medication. Now, I am not saying the services are perfect or even accessible to all HIV positive women. But the fears associated with living with HIV are somewhat diminished in the lives of women who are able to seek medical care or services in a comfortable setting.

My experience has shown that women, who are HIV positive are very concerned about maintaining their confidentiality. The reasons for this are very valid, fear of violence or being stigmatized, shame and concern for the safety and well-being of their children. This need for confidentiality is a huge barrier that may permit women from accessing these organizations and receiving support from service providers. At least we are pleased to say that we are able to provide practical assistance and a supportive environment to some women and children who need services through the organization and service providers mentioned above. But after last week, I have to ask myself, where do women go that don’t know about HIV? How do they find services and have the opportunity to get tested in confidential and caring environments? What if women want to know and talk about HIV and are not sure it is okay? How can they address their fears?

These are issues that many of us living with HIV or working in the HIV field (or both) have to deal with. Sometimes we don’t think about these issues on a consistent basis until other fears bring these issues to the forefront.

Despite that we all have fears related to a variety of issues and individuals can create solutions to addressing those fears with support. Many of us had fears when we first tested positive, that will always be with us in some way or another. Some of us still live in constant fear. We must try to be creative and make progress in spite of the fact that we know life is fragile, especially after the recent events in our country and the other fears that people may be experiencing. Seeking support and being able to look at our fears in an open and honest way can be one of the first steps in making sure that we take care of ourselves. It can sometimes also be important to acknowledge and accept the individual strengths and support that we can receive from our families, friends and community. My fears on the day the women approached me for conversation at the airport were about flying and being safe. Her fears upon seeing the red ribbon on my jacket connected to the fact that her husband had died of complications related to AIDS and she just needed someone to talk to. Our fears are always with us but support and communication are key tools to facing them.

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