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.
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:
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:
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:
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.
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:
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.
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.
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 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.
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.
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.
There are many other ways to express love and connection, not just through sexual intercourse. These include:
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.
In preparing to open a discussion about sex and intimacy with a partner, some key questions to consider include:
Once you are ready to have a discussion, following these steps can help it go smoothly:
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)®.
Suzy Kim, LCSW was Social Work Manager, Division of Rheumatology,
and co-facilitated the Program at the time of this writing