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Living With Lupus: Addressing Sex and Intimacy

Couple Having a Serious Talk

For most people, sex and intimacy are complex subjects to discuss openly, but it’s important to address these issues to maintain a satisfying sex life and healthy intimate relationships. The subject can be particularly fraught for those living with systemic lupus erythematosus, or lupus. Studies suggest people with lupus often abstain from sexual activity and avoid intimate relationships for a variety of reasons, including side effects of medication, mood changes, and physical challenges. All of these can affect sexual function, desire and behavior in both women and men with lupus.

Physical Challenges

Some people have been known to reduce their engagement in sexual relations when faced with challenging medical symptoms as a result of lupus. In some women, physical effects of the disease may include limited range of motion in the hips or knees and decreased vaginal lubrication. Men are reported to have higher rates of impotence.

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

Psychological and Emotional Effects

Researchers have found the biggest cause of sexual dysfunction is not physical but emotional. One study of 120 women with lupus reported that depression and psychological factors were the main reason for a decrease in sexual function, including desire. Among these women, no other clinical factors related to lupus were shown to be significant with respect to decreased sexual activity.

Psychological factors may include:

  • lack of desire or interest
  • negative body image
  • low self-esteem
  • depression and anxiety
  • how a person feels about their illness

While there are physical and psychological barriers to intimacy when living with lupus, open communication is one way to address these challenges with your partner.

Communicating with Your Partner and Health Provider

Both healthcare providers and people affected by lupus often experience discomfort around discussing sex and intimacy for a variety of reasons including fear, shame, cultural values, and assumptions about it not being important. However, it is appropriate to have an open conversation about sexual function with your healthcare team. The physical and emotional health status of people with lupus can be improved through collaboration with their healthcare team and support from social services. This can help open the door to improved intimacy and sexual relations.

  • Optimize control of disease activity with your rheumatologist.
    • Pursue and maintain medications that will control disease and may lead to reduced pain and fatigue.
  • 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).

Open communication with your partner is essential when it comes to nurturing a satisfying sex life.

  • Be open about your fears and desires. People with lupus may be nervous their partner will leave them because of their illness, or that they will never find someone to love and who will love them in return. These concerns may exacerbate the typical issues that individuals and couples face, including finances, loss of jobs, childcare and other pressures of daily life.
  • Try not to assume. For example, you might feel your partner thinks you are undesirable, when in fact they might not want to engage in intimacy because they are concerned they might hurt you.
  • Make time for yourselves. Set time aside to talk regularly 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/or responsibilities each week.

For more on this topic, visit: https://www.hss.edu/conditions_lupus-sexuality-intimacy-beginning-conversation.asp.

Lisa R. Sammaritano, MD, is a rheumatologist at HSS and with a clinical practice geared towards patients with systemic lupus erythematosus (SLE) and antiphospholipid antibodies, and combines this with clinical research in these areas. She is the lead author of the American College of Rheumatology Guideline on Reproductive Health for Patients with Rheumatic and Musculoskeletal Diseases and she is establishing a new Rheumatology Reproductive Health Program  within the Barbara Volcker Center for Women and Rheumatic Disease at HSS to help guide patients and their physicians in this important area.

Jillian A. Rose, PhD, MPH, LCSW, is the Director for Community Engagement, Diversity and Research at Hospital for Special SurgeryDr. Rose leads the implementation of innovative community programs to enhance health, access to care and self-efficacy of traditionally underserved communities, in collaboration with other healthcare organizations and government agencies. She participates in research and quality initiatives to identify and address health disparities to ensure the highest quality care for all patients. Dr. Rose provides ongoing leadership and support for the Hospital’s collection of gender identity, sexual orientation, race, ethnicity and preferred language data. In addition, Dr. Rose plays an integral role in the HSS Community Health Needs Assessment and Community Service Plan. Since August 2005, Dr. Rose has occupied a leadership position in managing rheumatology programs at the hospital, with a focus on two national peer support and education programs for people with systemic lupus and their families.

The information provided in this blog by HSS and our affiliated physicians is for general informational and educational purposes, and should not be considered medical advice for any individual problem you may have. This information is not a substitute for the professional judgment of a qualified health care provider who is familiar with the unique facts about your condition and medical history. You should always consult your health care provider prior to starting any new treatment, or terminating or changing any ongoing treatment. Every post on this blog is the opinion of the author and may not reflect the official position of HSS. Please contact us if we can be helpful in answering any questions or to arrange for a visit or consult.