Q: In Damaged Goods?, you candidly admit your experiences as a woman being informed that she has contracted an Sexually Transmitted Disease (STD). What prompted you to write about this topic?
A: At age 20, I was diagnosed with a cervical HPV infection. I had never heard of the disease, and spent two anxious weeks waiting to find out if I had cervical cancer. During this time, I contemplated losing my fertility and almost gave up on the idea that I would ever again enjoy a happy, healthy sex life. What I most wanted to know was if other woman had received a similar diagnosis, received effective treatments, regained her health—including regaining her sense of herself as a sexually-desirable person—found “true love,” and given birth to a healthy baby. That may have been asking for a lot, but I was anxious about all of those issues because the only HPV research I could find was limited to basic medical information. I found no in-depth studies of the lived realities of this illness, let alone a book that I could relate to as a newly diagnosed woman.
Q: You have been quite outspoken in the media about this topic. Can you discuss your history as a sexual health educator?
A: I began my career as a sexual health educator the year I was diagnosed. As a grad student, I became a sexual health peer educator at the college-level, and ultimately became the director of the University's sexual health education program. While director, I volunteered to participate in a 1999 MTV documentary that focused on young adults who had contracted STDs. Then, MTV featured me as a proponent for and provider of comprehensive sex education a 2002 documentary entitled Fight for Your Rights: Sex in the Classroom. Most recently, I've drawn on my sexual health education experience to work with the HIV/AIDS Coalition of Ventura County, CA, as both an HIV/AIDS researcher and as the lead organizer for the county's annual commemorations of World AIDS Day.
Q: How did you find the women you interviewed for the book? How did they feel about talking about such a personal issue?
A: I created flyers that advertised my study and I mentioned it whenever I gave sex ed presentations to adult audiences. Given the staggering numbers of women living with one or both of the diseases I studied, it was actually pretty easy to find women who qualified for my study. The challenging part was to make them feel comfortable talking with me about very painful experiences. I believe that two factors helped me gain their trust and create rapport: first, I guaranteed complete confidentiality and, second, I disclosed to each of them my own STD-status. While I had become extremely comfortable going public about my HPV, I always made it clear that I empathized with their anxieties about privacy. I also shared with them my commitment to bring this knowledge to women's health practitioners and to the public so that they knew they were contributing to helping other women who would follow in their footsteps.
Q: Damaged Goods? discusses how STD-stigma affect how these women feel about their lives and their health. How do you think this stigma has developed? How do you think it can be reduced?
A: STD-stigma is a gendered phenomenon, so it's developed alongside the sexist double-standard of sexual morality. If the biggest myth about STDs is that they only happen to promiscuous people, then the gendered aspect of STD-stigma is that STDs are worse for a woman's reputation than for a man's. STDs can be de-stigmatized by challenging the validity of a few stereotypes. We have to educate the public that all it takes is one sexual partner (consensual or nonconsensual, penetrative or non-penetrative) to pass on either HPV or herpes. We also have to promote the idea that STDs are a health problem, and no matter the sex of the person infected, STDs are not indicative of someone's moral character, social standing, intelligence, or of their ability to be a good spouse/parent.
Q: You talk about treatments and vaccines, but only a fraction of HPV strains are addressed by the current vaccine. Can you discuss this?
A: According to the website for GARDASIL, the only HPV vaccine currently approved by the FDA, it "helps protect against 4 types of human papillomavirus (HPV): 2 types that cause 70% of cervical cancer cases, and 2 more types that cause 90% of genital warts cases" (http://www.gardasil.com/). This means that being vaccinated reduces but does not eliminate one's chances for contracting genital warts or cervical cancer. So, while the vaccine is beneficial, it's vital that recipients continue to practice safer-sex, receive regular sexual health exams, and have open communication with sexual partners about their STD statuses.
Q: One of the most interesting observations you make about women with STDs is how they are treated by their medical practitioners. You mention 2/3 of the women you interviewed were unhappy with a lack of good “bedside manner.” Can you address how physicians and nurse practitioners can improve their patient relationships?
A: Sexual health practitioners need to have a better understanding of the social and psychological implications of STDs. I hope that my book helps medical practitioners see these diseases from their patients' points of view and increases their sensitivity when delivering STD diagnoses or treatments. The best way to have good bedside manners is to treat each patient as a whole person, not merely as a sick body part and definitely not as one who as “earned” their disease through “bad” behaviors.
Q: One of the issues raised in Damaged Goods? is having a healthy life after being diagnosed with a chronic disease. You call this “sexual-self reintegration.” Can you talk about this process?
A: An incurable illness requires a long-term plan for healing, and I make the point that STDs have a particularly damaging impact on a woman's “sexual self.” So I propose that the ultimate stage in living with a chronic STD is for the woman to integrate how she used to see herself as a sexual being (pre-STD) with how she sees herself after having received treatment. Perhaps she used to see herself as invincible to STDs or as irreparably damaged by previous sexual traumas, and now (post-STD diagnosis) she might see herself as damaged, contagious, or undesirable. Given its stigma and contagiousness, an incurable STD demands changes in sexual attitudes and behaviors if that woman aspires to have a happy and healthy sex life.
Q: What are the best ways women (and men) can get educated about STDs?
A: The internet can be a fantastic resource, and I highlight several reputable sexual health websites on my webpage: www.adinanack.com.
Q: Why do you feel this topic—which affects 15 million people in the U.S. alone—is so little discussed? Is it the shame associated with sexually transmitted diseases?
A: Prior to HIV/AIDS, the shame and stigma connected with STDs made it taboo to discuss diseases like genital herpes and HPV. With over two decades of HIV/AIDS education in the U.S., the social discourse and research about STDs has understandingly been dominated by a focus on HIV. While, there have been great strides in increasing the public's awareness about HIV testing/prevention, we have not seen comparable campaigns focus on other sexually transmitted viruses. Today, with the first HPV vaccine and a social climate that, thanks to HIV/AIDS activists, is more open to discussing sexual health, we should be focusing education campaigns on these other diseases which have quietly become pandemics, damaging the lives of millions of people around the world.