How stigma can cause hypervigilance and impact sex for people living with HIV

While antiretroviral drugs can control HIV and bring it down to undetectable levels, receiving the news of an HIV diagnosis can be traumatizing. When an HIV diagnosis happens, people living with HIV (PLWH) often take measures to feel in control, as the diagnosis has left them feeling the opposite.

The need to be in control all the time can have negative consequences for your sex life. When we’re focused on keeping everything in our lives under our thumbs and paying attention to every single detail, we leave very little room for the vulnerability and relaxation needed to foster good sexual connections and desire.

When this happens, it’s important to emphasize that it is not a symptom of something wrong within a person who’s been diagnosed with HIV. Rather, it is a response to the unfounded stigma still faced by PLWH. “I’d like to point out that when it comes to hypervigilance and stigma, the issue is not about the person living with the virus. The issue is the world,” says Juan Michael Porter II, senior editor of TheBody and TheBodyPro, who has been living with HIV since 2015.

“Sexual performance and arousal is affected by a number of factors, including a person’s perception of themselves and how others will receive them,” David Fawcett, Ph.D., LCSW, vice president for clinical programming at Seeking Integrity, tells TheBody. “Sexual arousal requires a certain amount of emotional safety in order to feel that one’s feelings might be reciprocal.”

Let’s break down what HIV-related hypervigilance is, how it manifests, and the ways it can impact sex.

What Is HIV-Related Hypervigilance?

Hypervigilance refers to the elevated state of assessing the threats that are (or potentially are) around us. It is part of a nervous system state in which we’re constantly in a fight-or-flight mode. We feel intensely alert at all times, and there is a need to try to control things around us. This can be our schedule, eating habits, sleep habits, relationships with others, or our sex life.

When PLWH experience hypervigilance, it can be an attempt to control surroundings in the face of something that feels uncontrollable. “This is ultimately due to the stigma we see with HIV,” says Lee Phillips, Ed.D., a psychotherapist and certified sex and couples therapist.

While it may feel very distressing, this is actually quite a common response to living with HIV. HIV-related hypervigilant behaviors are deeply connected to trauma, stigma, and the potential for subsequent criminalization, explains Joseph Cherabie, M.D., M.Sc., assistant professor in the Division of Infectious Diseases at Washington University in St. Louis, associate medical director at the St. Louis STI/HIV Prevention Training Center, and clinical ambassador for the national “Let’s Stop HIV Together” campaign. According to the Centers for Disease Control and Prevention (CDC), 35 states have laws that criminalize HIV exposure or transmission.

“Individuals with HIV often show up in my clinic saying they have not been sexually active since their diagnosis due to fear of criminalization, even in the era of undetectable equals untransmittable (U=U). They worry that their diagnosis will be used against them, which, as you can imagine, is quite anxiety-inducing,” Cherabie says. Others may fear that HIV was a punishment they deserved, leaving them bereft and deeply anxious. “Individuals who have HIV fear passing it to their partners and oftentimes self-stigmatize, as if the HIV is due to past faults or flaws, often within their sex lives,” he adds.

Porter said that he’s had a few very negative experiences when he disclosed his HIV status to partners, so he tries to only do so in safe spaces. “For instance, in a crowded space, I’ve asked people to be present in restaurants where I’m on dates to make sure that if anything goes down, there’s someone there to help me get out of the situation,” he says.

There is still so much stigma around HIV, even though there have been amazing strides in medical management. HIV is very manageable in terms of its impact on physical health, but it still comes with a lot of emotional baggage in our sex-negative society.

HIV-related hypervigilance can manifest in many different ways and symptoms. It can cause:

• Anxiety
• Depression
• Obsessive behaviors
• Fixation on potential threats
• Increased heart rate
• Low desire
• Sexual avoidance
• Low arousal
• Low self-esteem

How This Impacts Sex

Good sex requires intimacy and a certain degree of emotional comfort. “This requires trust, vulnerability, and self-worth,” Fawcett tells us. “When a person experiences stigma due to living with HIV (or in many other ways, such as abuse), there is a great deal of internalized shame that occurs, and this directly impacts one’s ability to enact those skills necessary for [intimate] connection.”

When in a state of high anxiety as a result of an HIV diagnosis, we may begin to avoid sex altogether. This, in turn, can lead to a low desire for sex. Hypervigilance disrupts the nervous system, which impacts arousal and sexual function.

“When people become anxious before or during sex, their blood vessels contract, and this constricts the blood throughout the body, including the genitals,” Phillips says. “Therefore, we can see erectile challenges in penis owners and lubrication issues with vulva owners because the blood vessels in the genitals close.”

How to Manage Hypervigilance for More Embodied Sexual Experiences

1. Trauma-Informed Care

Cherabie says that trauma-informed care makes a big difference in dealing with hypervigilance around HIV. When providers are aware of the psychological effects of an HIV diagnosis, they can help their patient deal with the emotional repercussions. This allows them to feel more settled and less anxious.

2. Sex and HIV Education

The big driver of anxiety around HIV is a lack of proper education. When people who are diagnosed with HIV begin to understand U=U (i.e., undetectable equals untransmittable, or the fact that a person who is on HIV treatment and has an undetectable viral load cannot pass the virus to a partner during sex) and learn about HIV medications and sexual health goal-setting, they are better equipped to manage their emotions and their sex life.

3. Journaling

Writing down our feelings allows us to process them. “Journaling can help us release stuck emotions and make sense of our thoughts and feelings [around] being HIV hypervigilant. Just write whatever comes to your mind,” Phillips says.

4. Seeking Outside Help

It is a good idea to seek therapy if your symptoms are negatively impacting your life—sexual or otherwise. “It is sometimes difficult to access for many reasons, but most HIV service organizations are equipped with at least a minimum level of mental health providers who understand the situation and who are well equipped to treat it,” Fawcett says.

5. Accepting Our Feelings

We often push our feelings away, invalidating them. This doesn’t make them go away. They are still there, and they still have an impact. “Be gentle with yourself, and try to stay as non-judgmental as possible about your feelings. Often, our triggers give us an opportunity to do some more grieving or to heal some things from the past that need to be dealt with,” Phillips says.

6. Focusing on Sensations

During sex, focusing on sensations can help us come out of a state of anxiety and back into our body. “Take deep breaths, focus on [your] sensations, and exercise mindfulness during sex to focus on anything other than anxiety,” says Cherabie.

The bottom line: You’re not alone. There are health care providers that have sex-positive information so that you can live your best life—which you deserve.

By Gigi Engle