Feelings about sex after your HIV diagnosis

Good sex, intimacy and physical pleasure are integral aspects of wellbeing. This is no different if you are living with HIV. People with HIV want the same things as everyone else – love, affection and the pleasure and satisfaction you can get, and give, by having sex.

But often, feelings about sex are complicated by an HIV diagnosis. While part of this has to do with the fact that HIV is often sexually transmitted, much of it has to do with stigma directed towards people living with HIV.

Not all people living with HIV experience stigma, and things have improved over time. But most people occasionally experience it.

Stigma is made up of negative attitudes, fears, prejudice and discrimination towards people living with HIV. It can result in people living with HIV being insulted, rejected, gossiped about, and even a loss of shelter and livelihood.

Most often, stigma results in the rejection of people living with HIV as sexual partners, because they are viewed as ‘dirty’, ‘infectious’ or ‘dangerous’. Unfortunately, many people with HIV internalise these beliefs, leading to self-stigma – thoughts and beliefs that you are not desirable and not worthy of experiencing pleasure and intimacy.

Most people diagnosed with HIV now can expect to live long lives, and the scientific finding that U=U means that you need not worry about passing HIV on to your sexual partner if you are on treatment and have an undetectable viral load. However, these facts are not always widely known. Many people still harbour outdated stereotypes about living with HIV and may judge people with HIV harshly.

It can be particularly hard to deal with this if you are judged as being a bad or immoral person, simply because you have HIV. This may also be based on factors such as your sexuality, sexual behaviour, and other behaviours, such as injecting drug use. These judgements can impact your sex life.

Feelings about sex will differ greatly depending on your unique circumstances. This page delves into some of the more commonly reported feelings and experiences that arise soon after a diagnosis.

Initial reactions to your diagnosis

While this will vary greatly among people living with HIV, how you feel about sex soon after your diagnosis will be closely tied to:

• How you acquired HIV: people who acquire HIV through sex often have very different feelings about sex than those who acquired it through injecting drug use or have had it since birth. Much of this is linked to stereotypes regarding promiscuity and irresponsibility. A common feeling is ‘how could I have been so stupid as to let this happen?’ This may result in ‘going off’ sex for a period, especially right after diagnosis. Some people diagnosed with HIV find that it takes them a long time to feel sexual desire again. This may also be the case if you acquired HIV from sexual assault. Take all the time that you need, but know that regardless of how you acquired HIV or when, you deserve the right to a pleasurable sex life. HIV should not get in the way of that.
• How you first learned that you are living with HIV: learning that you have HIV is almost always going to come as a devastating shock. Even if you suspect that the test might be positive, confirmation can be gut-wrenching. For some, HIV is transmitted under circumstances such as a partner’s infidelity, or failure of a prevention method (such as condom breakage or PrEP failure). These instances can be particularly challenging to deal with. Being guided through the diagnosis by supportive, empathic, and non-judgemental healthcare providers can profoundly impact the way you think about sex after your diagnosis.
• Blame and shame almost always accompany an HIV diagnosis. Sometimes blame is directed at sexual partners, but more often you may blame yourself. Shame, largely driven by HIV stigma, tends to follow this. Instead of thinking that something bad has happened, you may be tempted to think that you are a bad person. It can be very hard to see yourself as sexually desirable if you remain stuck in shame. It may also lead to unhealthy coping behaviours. Here, reframing these thoughts may be helpful. How would you respond to a friend who tells you they’ve been diagnosed with HIV? Try to extend this kindness to yourself. More than anything, blame and shame will not get you any closer to living a healthy life with HIV, so it’s best not to dwell there for too long.
• Your physical and mental health at the time of diagnosis: if you are very ill at the time of your diagnosis, this may add to the trauma of receiving an HIV diagnosis and may also exacerbate negative feeling about sex. Desire and pleasure may be far from your mind, and you may feel like they will never be a possibility again. These feelings often pass after starting treatment, regaining health, and reaching an undetectable viral load. However, it is important to consider how any enduring trauma related to illness affects your sexual confidence.
• Reactions from those around you: negative reactions can worsen the blame and shame spiral, while positive reactions often help with accepting that you have HIV. You decide if, when, and how you share your diagnosis with friends, family, co-workers, and social media contacts. A strong support network can have great benefits for dealing with an HIV diagnosis. Because HIV is mainly transmitted sexually, many people may have questions relating to your sex life, including the type of sex you like having, with whom, how often – and other invasive, inappropriate questions. Even when these questions are well-meaning, they can be incredibly stigmatising and can have a lasting impact on how you view sex, pleasure, and yourself as a sexual being. You do not need to share anything that you feel uncomfortable sharing. It is often helpful to decide in advance what details you’d like to share and how you choose to frame your diagnosis. A trusted friend, counsellor or trained mental health professional can help you navigate this.
• Reactions from romantic or sexual partners: anticipating these reactions is often what causes the most anxiety for people with HIV, especially soon after diagnosis. In some places, there are legal requirements around telling your sexual partners you have HIV before having sex. Even in places where this is not the case, this can be such a fraught and anxiety-provoking process that you may feel like you’d rather not have sex at all than disclose. However, these feelings usually soften over time. While rejection is never fun, you learn that just as you can be rejected based on your body type or height, you can also be rejected based on your HIV status. When it comes to telling a partner that you already have a relationship or a casual arrangement with, it may be helpful to approach them by encouraging them to get an HIV test. However, only do this if you are not placing yourself in any immediate danger. Once they have had some time to process their HIV test result (and feelings such as anger or betrayal), you may want to share information about U=U or PrEP with them. You do not need to do all the work of educating sexual partners about HIV, but it does help to refer them to sources such as aidsmap (this website).

Instead of a negative response, some people living with HIV have reported feeling liberated after receiving their diagnosis. This is usually described as a sense of relief over not having to worry about getting HIV anymore. You may even find that you have greater sexual desire than you did in the past, or feel freer to explore the type of sex you’d like to have.

Either way, the intensity of feeling that occurs soon after receiving an HIV diagnosis usually smooths out over time.

Life goes on, and so should your sex life

Once your viral load has been undetectable (less than 200 copies) for six months or more, you can feel confident that there is zero risk of HIV transmission during sex. While it can be frustrating to wait for your viral load to drop after starting medication, most people have an undetectable viral load within a few months. And even with a viral load below 1000 copies, the transmission risk is almost zero or negligible.

For many living with HIV, becoming undetectable and knowing that they cannot transmit HIV has been a turning point in how they feel about sex. It has allowed them to move away from thinking of sex in terms of transmission and risk, and to focus instead on the pleasurable aspects of sex. U=U gives you the confidence to know that all types of sex, with any partner, will not result in you passing HIV on, even when a condom is not used and even when your partner is not taking PrEP.

However, the impact of U=U is limited by how widely it is known, understood, and accepted. Some people living with HIV find it tiresome to repeatedly explain the concept and defend the science behind it.

Many of your HIV-negative sexual partners will feel reassured by U=U. They will have no problems trusting the science and having condomless sex with you; in fact, some may even seek out partners who have HIV and are undetectable.

Others may be reassured by using PrEP or condoms (of course, condoms have the added benefit of preventing many other STIs too). Find what works for you and your sexual partners. Here, it is important to know that U=U and PrEP only work to prevent HIV transmission, and that there are other options for preventing other STIs, such as condoms and doxyPEP (for gay and bisexual men and transgender women). This knowledge empowers you to have the type of great sex you want, enjoy, and can continue having as you live with HIV. Open communication about sex, safety and pleasure will set both you and your partner at ease.

Many people living with HIV also find that exploring foreplay, non-penetrative sex, and oral sex can also be both incredibly enjoyable, and remove some of the fears regarding transmission, especially with a new partner or early on during a relationship.

You may also find that you are open to exploring kinks and fetishes that you had never thought of exploring before getting HIV. You should feel the freedom to explore these sexual desires. It often helps to find like-minded kink communities where you feel safe to learn more, explore and feel welcomed.

As you explore sex as a person living with HIV, there may be times when having sex is stressful – either because of stigma, rejection, or trauma related to your diagnosis. Laws in some countries that criminalise people living with HIV for not telling sexual partners that they have HIV before sex can be a constant source of anxiety and may even make sex feel dangerous or unpleasant.

In some cases, this causes hypervigilance around sex, dating and romance. This increased awareness is linked to a stress response that alerts you to danger. If this hypervigilance persists, it can lead to chronic dysregulation of stress hormones, which interferes with the ability to be at ease and feel pleasure, and an unhealthy relationship with sex and sexual desire may result. It can lead to maladaptive coping strategies, such as the need to have alcohol or drugs before sex. Speak to a healthcare professional (possibly a sex therapist) about sexual hypervigilance and concerns that you have around having sex.

If having sex with a partner feels overwhelming or not possible, finding other ways to pleasure yourself sexually, such as masturbation, are important. Just because you may choose not to have sex with others for a period does not mean that you are no longer a sexual being. Having an orgasm by yourself has many of the same benefits that sex with another person has.

Conclusion

Sex can feel good, bring you closer to other people and satisfy a powerful desire. That is reason enough to continue to enjoy it as often as you wish. But there are other recognised health benefits too: sex can help you relax and sleep better, it can be good exercise, relieve pain, and improve heart health. Having a healthy sex life contributes to your overall health and wellbeing and this shouldn’t come to a halt because of HIV.