The Positive Side

Fall/Winter 2005 

Sexual Healing

Have you lost that loving feeling?

Essay and interviews by Darien Taylor

SEXUAL DYSFUNCTION: It is the elephant in the HIV clinic waiting room. We all know it’s there (not moi, of course!), but we don’t want to talk about it. And why not? At some deep, dark level of our psyche, do we feel guilty about having sex? In spite of all the efforts to make safer sex sexy, do we still have fears about infecting our loved ones? Do we feel that we should just be grateful that we’re alive? Or does the cheery sex-positiveness we’re supposed to maintain make it hard to admit that being positive makes us feel negative about ourselves, sexually speaking?

How we express ourselves sexually is an essential part of our identity. And it’s no surprise that HIV can have a significant impact on our experience as sexual beings — whether it’s the impact of our diagnosis, which can leave us feeling “tainted” or “dirty”; the impact of the disease itself on our health, emotions and stamina; or the pressures of disclosure, condom use and safer sex. Or perhaps it’s side effects, such as lipodystrophy or diarrhea, that have taken a toll on our body, self-esteem and body image.

Sexual dysfunction in the context of HIV is understudied in both men and women, leaving many gaps in our understanding of this complex interaction. We know that sexual difficulties are fairly common in the overall population. And research indicates that issues with desire, arousal, satisfaction and orgasm — as well as erectile difficulties and problems with lubrication and pain during intercourse — are even more common in the context of HIV disease.

The causes of sexual difficulties are well documented and the impressive roster of experts interviewed for this article helps to situate them in the context of HIV: stress, anxiety, depression, body image issues, alcohol and recreational drugs (including cigarettes), as well as some prescription drugs, particularly certain antidepressants and meds used to treat high blood pressure, cholesterol and triglycerides. Research is beginning to ask whether highly active antiretroviral therapy (HAART) is a possible cause of sexual dysfunction in people with HIV/AIDS (PHAs). HIV itself can wreak havoc with our hormones, and our hormones play an important role in regulating our libido. For instance, testosterone levels are known to be low in many hiv positive men.

Four PHAs talked to The Positive Side about the challenges (and, in some cases, joys!) of enjoying a healthy sex life with HIV. As they describe, it’s all a bit more complicated than the cause-effect relationship that research seeks to tease out. For one, many of us had issues with sex even before we became HIV positive, so it’s difficult to know how much “baggage” we brought forward into our diagnosis. Consider, for example, the number of PHAs for whom childhood sexual abuse was an issue. These experiences affect how we construct our adult sexuality.

Secondly, when we experience sexual problems, we experience them in the context of our full and varied lives. So, it’s challenging to pinpoint the source of a sexual problem. Is it depression, our meds, or the sheer exhaustion of working full-time at a demanding job that makes it so difficult to summon that loving feeling at the end of the day? Or is it all of the above? Even the most rigorous investigation of sexual problems — with a counselor, therapist, gynecologist or HIV doctor — can be challenged to come up with the cause, let alone the cure.

In the end, this article probably raises more questions than answers. While it seems likely that HIV, its associated conditions and the drugs we take to deal with these have some relationship to sexual dysfunction, it also seems likely that it will take a long time to characterize this relationship more accurately.

In the meantime, given the significance of sexual function in terms of quality of life, health care providers working with PHAs should consider incorporating questions about sexual function into their patient interactions.

And if you, as a PHA, feel unsatisfied about your sexual life, don’t be ashamed to look for solutions, both creative and clinical. Talk with your sex partners and health care practitioners and check out the Internet or your local sex toy store. If you don’t have someone to join you on your erotic adventure toward sexual healing, maybe this article will help you acknowledge that you’re not alone and encourage you to start out on this journey and see who you meet along the way.

Darien Taylor is the Director of Treatment Information at CATIE. She has been living with HIV for more than 15 years. Although she lamented the impact of HIV on her sex life for many years, she would now prefer to curl up in bed with a good book.