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Peer Counseling Perspectives

One Size Does Not Fit All: Women and HIV

May/June 2004

Mary Lynn Hemphill, L.M.S.W.

Most women know that the familiar line found in some clothing labels -- "one size fits all" -- is a rather hopeful myth. Our bodies are just not that easy to categorize. This message was brought home to me in a different venue when AIDS Survival Project (ASP) sponsored the forum "For Women, By Women" this March.

The workshop was facilitated by Tonia Poteat, PAC, an experienced yet humble medical provider from the women's clinic at the Grady Infectious Disease Program. For two hours, Tonia answered questions, facilitated discussion and provided both basic and advanced education for twenty-five women. While commonality between the women was acknowledged, the unique nature of each woman's experience was impressive. The women's knowledge of health issues and their experiences related to their physical being were diverse. It was clear from the lively workshop that for women living with HIV, there may be a lot more questions than there are answers -- even if you are a medical provider. The interaction of hormones, HIV and medications are complex and unique, compounded by our natural aging process, birth control needs, pregnancy and stress. The mystery of how these elements affect health, metabolism, physical appearance, mood and sexual desire remains largely unsolved.

If you are an HIV-positive woman reading this, please be aware that research on woman-specific HIV issues has been slow to develop, so there may not be answers to all your questions. However, there will be information about your questions. As a team, you and your medical provider can consider this information in evaluating your situation and treatment plan. Education and sensitivity to physical and psychological changes are essential.

Women are often described as being relationship-oriented. This can be a valuable quality for an HIV-positive person if she uses her medical provider, friends, partner and support group peers as sources of information and experience. Robin Lennon-Deering found in her study of HIV-positive women in all-female support groups that "individuals can go to a support group for support and come away with more healthful behavior." Her research found that within the population she studied, 66% of group members had reduced their risk behaviors, 49% had improved adherence with their medications and 69% felt less ashamed about having HIV. The sharing of factual education can empower women to grasp increasingly complex medical issues, which allows for better self-management.

Although specific answers about how HIV affects women may be hard to come by, information is available in many settings. In addition to support groups, many AIDS service organizations offer free treatment forums, publications, retreats and peer counselors for women. Peer counselors are usually available by phone, so any woman with access to a phone can obtain information while maintaining confidentiality.

Some excellent publications for HIV-positive women are listed in a sidebar to this article. Among the many articles and booklets about HIV in women, one which I have found outstanding and accessible is "Treatment Issues for Women," published by ACRIA [AIDS Community Research Initiative of America at (212) 924-3934]. It can be downloaded at no charge from their Web site at

Women with access to the Internet will find a host of valuable Web sites. Some of them are listed along with this article. Of special note among these is a Web site developed by Dawn Averitt, a former staff person at ASP. Dawn's most recent creative contribution to empowering HIV-positive women is the Web site It is dedicated solely to issues of concern to HIV-positive women.

Unfortunately, too many women miss out on resources available on the Internet. In fact, Lennon-Deering found that although 52% of the women in her study had access to a computer with an Internet connection, only 4% identified that they utilized this resource. Here at the ASP office, the staff and volunteers in our Treatment Resource Center (TRC) will happily -- and patiently -- assist people in seeking HIV-related information on the computers in the TRC. The TRC library also has a sizeable section devoted to women and HIV. These services are available at no cost. The TRC staff is available by telephone to assist women (as well as men) in gathering and understanding information about HIV-related concerns. They thrive on new questions, so come on, women, and bring them a challenge!

Here are some guidelines for HIV-positive women looking to maximize their health:

  • Become a team player with your medical provider. If you work on this and are still unsatisfied with the quality of your relationship, seek another provider.

  • Do your homework -- learn all that you can about your concerns before your medical appointment.

  • Write down any symptoms and questions you have and take the list with you to your medical visits. Pay attention to what's normal for you and keep track of changes so your provider can assess their significance.

  • Take a family member or friend with you to your appointments to act as your advocate. If your feel confused, vulnerable or anxious your advocate can help make sure you have your concerns addressed.

  • Have medical people write down any terms they use with which you are not familiar. This includes diagnoses, medications, suggested tests and treatments.

  • Become a good researcher. This includes developing a working understanding of your reproductive system (also known as "down there"!). With cervical cancer and menstrual irregularities more common in HIV-positive women it's critical that you know all you can about gynecological care. According to The Well Project, HIV-positive women are 10 times more likely to have abnormal Pap smears than HIV-negative women are.

  • Participate in a women's support group.

  • Find a mentor and work her into your life regularly.

  • Explore clinical trials.

  • Be aware that medical knowledge about HIV/AIDS is always changing so the approach you and your provider take needs to remain flexible.

  • VOTE! Funding for HIV/AIDS care, insurance regulations, confidentiality, family planning and medical research are all influenced by government funding and policies. Make sure your needs and perspective are represented.

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This article was provided by AIDS Survival Project. It is a part of the publication Survival News.
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