Lupus, Sexuality and Intimacy

Adapted from a presentation to the SLE Workshop at Hospital for Special Surgery

Discussing sex, sexuality and intimacy can be uncomfortable, yet it is important to do so. Sexuality and intimacy are part of the human experience and have the potential to add great satisfaction and pleasure to our lives. When discomfort surrounding these issues is compounded by a diagnosis of systemic lupus erythematosus (SLE or commonly called lupus), challenges to a satisfying sex life and open communication may be multiplied.

Background and issues

Studies in patients with lupus suggest that they may tend to abstain from sexual activity and avoid intimate relationships for a variety of reasons. Some women have been known to reduce their engagement in sexual relations when faced with medical challenges. But the situation may be improved on both a physical and a psychological level to increase sexual and intimate satisfaction and overall quality of life.

This summary provides a discussion about how lupus can affect sexuality and intimacy, and it answers some common questions, such as:

  • What are the physical challenges to sexual function and intimacy with lupus?
  • What are psychological and emotional effects of lupus on sexuality and intimacy?
  • How can lupus affect relationships with intimate partners?
  • How can we talk about sex and lupus with our healthcare team and our partners?
  • What are some practical ways for individuals and couples to improve sex, sexuality and intimacy when living with lupus?

Physical challenges to sex and intimacy among people with lupus

Many factors impact sexual functioning in both women and men with lupus. Overall, changes in sexual functioning, desire and behavior related to lupus are often the result of multiple and interrelated factors, including:

  • the disease itself
  • medication side effects
  • psychosocial factors such as mood changes, negative body image or the way a person feels about their illness

In general, the greater the severity of one’s disease, the more sexual difficulties one may have. Physical effects of disease in some women may include:

  • decreased vaginal lubrication
  • pain
  • limited range of motion in hips or knees

Men with lupus are reported to have higher rates of impotence.

Chronic pain, stiffness and fatigue, as well as certain medications, may decrease libido among people with lupus.

Psychological and emotional effects of lupus on sexuality and intimacy

Sexual intimacy is not only impacted by physical factors, but also emotional ones. In fact, studies suggest that the biggest factor leading to sexual dysfunction is not physical but emotional. People with lupus may avoid sex due to psychological factors.

Some psychological dimensions include the following:

  • desire and interest
  • body image
  • self-esteem
  • depression and anxiety

Desire and interest

When an individual is experiencing pain, vaginal dryness, limited mobility and/or other physical symptoms, the effects can decrease their desire and interest and lessen their enthusiasm to participate in sexual activities. One study of 120 women with lupus reported that depression and psychological factors were the primary factors contributing to a decrease in sexual function, including desire. Among this group, no other clinical factors related to lupus were shown to be significant with respect to decreased sexual activity.

Body image

A positive image of one’s own body is important. However, the bodily changes that may accompany lupus can undermine that. Individuals might gain or lose weight, lose their appetite, or experience other problems related to their illness, such as joint deformity, hair loss, rash or other physical effects that can change one's body image and perception of self.

For example, some women may feel that their sexuality is defined by their hair. If they lose some or all of their hair due to lupus, this can cause a lot of distress. Active or scarring rash is another important aspect of appearance that may impact body image, as is the corticosteroid-induced change in weight and weight distribution. An open-minded redefining of sexuality can help restore a positive sense of one’s own body.

Self-esteem

An individual with lupus can be bombarded with many challenges to their self-esteem. Some people might have to leave their jobs or cease other activities or social engagements, and this can make people feel less self-confident and worthy. With regard to their sexuality, defining attractiveness and beauty in one’s own way and for one’s own self can help restore some of the lost self-esteem. Being able to have a good sex life and an intimate relationship with a partner can also bolster self-esteem.

Depression

Depression is increased in patients with lupus and may stem from immediate and long-term health concerns, ongoing pain, financial stresses and even the effects of the disease itself. Changes in one's appearance and associated feelings about body image, worries about partner interest, and other challenges can also lead to illness-related depression and anxiety. This can, in turn, diminish sexual activity and intimacy.

Effects of lupus on relationships with intimate partners

Individuals with lupus express concerns about whether their partner will leave them due to the disease or if they will ever find a partner to love and love them in return. These concerns related to lupus may compound the typical issues that couples deal with, including finances, loss of jobs, childcare, etc. Any of these can have a detrimental effect on physical intimacy, and not only for those with a chronic disease. But sex is a good thing when it comes to our physical and emotional health. Studies show that sex can reduce the risk of death, reduce stress, improve sleep and help to cultivate satisfying partner relationships.

A lupus diagnosis may prompt a shifting in roles and responsibilities within a couple. For instance, if someone with lupus can no longer hold down the job they formerly held, the responsibility for generating family income might fall to their partner. Many individuals will feel that they are bringing less to the table in the relationship, and feelings of guilt or shame may follow. A disease flare may also bring about guilt, shame, anxiety, and resentment or blame. In these instances, the sexual relationship could suffer. Couples need to share these emotions constructively in order to improve the quality of their sexual relationship.

Strengthening your emotional and physical intimacy

Sensate focusing is a technique often used in couples therapy. This exercise focuses on attending to your body and the needs of you and your partner, engaging in sexual exercises that avoid the genitals. The aim of this method is not to achieve orgasm but to improve intimacy by helping couples learn about themselves and each other. It removes the stress of needing to have an orgasm.

An exercise for couples that can be done at home

  1. Decide who will be the giver and who the receiver.
  2. The receiver can close their eyes or be blindfolded if preferred.
  3. The giver can explore their partner's body with their lips, hands and tongue, while avoiding genital contact.
  4. The receiver will share what areas or sensations feel good.
  5. Give each other enough time to fully experience both roles, being a giver and a receiver (10 to 15 minutes each).

There are many other ways to express love and connection, not just through sexual intercourse. These include:

  • Touch: Explore your partner's body. This can include holding hands, cuddling, stroking, kissing, etc.
  • Self-stimulation: Masturbation is normal and healthy. This can even occur during a sexual activity with a partner.
  • Oral sex: This can be an alternative or supplement to intercourse.
  • Different positions: Change your positions to what feels more comfortable for you, such as kneeling or sitting. You can go online or to the library to get additional resources.
  • Vibrators and lubricants: These are additional ways to add pleasure. If there is an issue with vaginal dryness, you can purchase an over-the-counter lubricant or speak to your doctor about a prescription product.

Opening communications

Communications with healthcare professionals

Sexuality is often overlooked as a topic of discussion in the healthcare system. Doctors, social workers and nurses do not routinely ask patients questions related to their sexual activities and function because it is not normally part of a routine physical exam. Professionals are often silent about sexuality and intimacy because they are limited in time during one medical visit and may prioritize issues of disease assessment and treatment. Another reason might be that the subject is uncomfortable. Professionals are not sure if it is their right to ask and are often ambivalent about doing so. Many physicians are not trained in this area, so they may feel they cannot address it.

Patients feel discomfort when approaching the subject as well. That discomfort may come from cultural influences, how we were brought up, the society in which we live, and how our parents display affection. Fear may be another factor. A patient may think that it is best to keep this issue to themselves out of fear about how people will react if they discuss such issues. However, it is appropriate to open a conversation about sexual function with your healthcare team if it is not already being discussed. It is appropriate to address these issues with your rheumatologist, gynecologist, primary care provider, therapist or social worker.

Couples communication

In preparing to open a discussion about sex and intimacy with a partner, some key questions to consider include:

  • Are you comfortable talking about sex?
  • What are some of the sexual messages you received growing up? (They may be cultural, generational, etc.)
  • How did you learn about sex?
  • How did your parents show affection towards each other?
  • How often do you communicate about your sexual needs and desires?
  • What are your fears and inhibitions around sex?
  • Do you feel you have a healthy attitude towards sex?

Once you are ready to have a discussion, following these steps can help it go smoothly:

  • Discuss with your partner your potential fears and desires. Being attentive during this discussion is crucial for both partners to really understand each other.
  • Use "I" statements instead of "you." For example, "I feel cared about when you hug me and hold me close," instead of "you never touch me anymore."
  • Address issues of miscommunication. For example, you might feel your partner thinks that you are undesirable, but he or she might not want to engage in any activities because he or she may not want to physically hurt you in the process if you are having a lot of body aches and pains.
  • Find a neutral place at home to start a conversation.
  • Build in a set time to talk and check in so that you are not talking only when problems arise.
  • Couples can have busy lives, so it is important to spend quality time with each other away from your children and responsibilities each week. Even 20 to 30 minutes together, like taking a shower together in the morning, can be effective. Create a ritual.

Practical strategies to enhance sexual satisfaction

Counteracting physical symptoms of lupus

  • Optimize control of disease activity with your rheumatologist.
    • Pursue and maintain medications that will control disease and may lead to reduced pain and fatigue.
    • Adjust medications that may have a negative impact on sexual desire as approperiate.
    • Consider physical therapy to improve joint range of motion and muscle strength and lessen pain. One study has even shown improved sexual satisfaction among rheumatoid arthritis patients who had total hip replacement surgery to treat destructive arthritis that had been limiting the range of motion in their hips.
  • Deal with main triggers such as pain and fatigue.
    • Plan sexual activities when pain is mildest (e.g., towards the evening if pain is less prevalent at that time).
    • Take pain medications one-half hour prior to sexual activity (upon your physician's approval).
    • Place yourself in a comfortable position (e.g., a spooning position that takes pressure off painful areas of your body).
    • Make sure you are well rested before engaging in any activities. A nap beforehand can be helpful in enhancing your sexual encounter.
  • If you experience vaginal dryness or a yeast infection, talk to your doctor. Lack of lubrication due to vaginal dryness has been identified in studies as an important negative factor. Use vaginal lubricants if this is an issue.
  • Encourage foreplay and massage, which give your body time to respond to stimuli.

Decreasing the impact of lupus symptoms with Raynaud's phenomenon

  • Avoid being in a cold room.
  • Wear socks to reduce the coldness.
  • Take a warm bath before any sexual activities to open your blood vessels.
  • Take the bottom position during sexual activities to reduce pressure on hands and feet.

Improving the sexual and emotional relationship with your partner

  • Communication is vital; talk to your partner.
  • Stay relaxed.
  • Try new things and take risks.
  • Be playful.
  • Explore, explore, explore.
  • If there are any problems, do not get discouraged but keep trying.
  • If you need additional guidance, seek help from a therapist or specialist.

Improving mood, body image and self-esteem issues

  • Mood issues or negative feelings can be difficult to address on one’s own. Address these issues with your healthcare team, whether it be with your rheumatologist, gynecologist, primary care provider, therapist or social worker.
  • Therapy or medication can improve depression and anxiety in lupus patients, and this may in turn lead to greater sexual function and intimacy.

The physical and emotional health status of lupus patients can be improved through collaboration with their healthcare team and with support from social services. This can help open the door to improved intimacy and sexual relations.

Learn about the SLE Workshop and get more information on support services at HSS available for people with lupus and their loved ones by visiting LupusLine®, LANtern® (Lupus Asian Network), and Charla de Lupus (Lupus Chat)®.

Additional Resources

Authors

Image - Photo of Lisa R. Sammaritano, MD
Lisa R. Sammaritano, MD
Associate Attending Physician, Hospital for Special Surgery
Associate Professor of Clinical Medicine, Weill Cornell Medical College

Photo of Jillian Rose, PhD, MPH, LCSW

Jillian Rose, PhD, MPH, LCSW
Director, Community Engagement, Diversity and Research
Department of Social Work Programs
 

Suzy Kim, LCSW was Social Work Manager, Division of Rheumatology,
and co-facilitated the Program at the time of this writing

 

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