Lupus, Sexuality, and Intimacy: Beginning a Conversation

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

Jillian A. Rose, LMSW
Manager of LupusLine® and Charla de Lupus (Lupus Chat)® Programs
Hospital for Special Surgery

 

Suzy Kim, LCSW
Social Work Manager, Rheumatology
Hospital for Special Surgery


Introduction

At this session of the SLE Workshop at HSS, Jillian Rose, LMSW and Suzy Kim, LCSW discussed the effects of sex, sexuality, and intimacy for people living with SLE (lupus). Rose and Kim explored the physical, psychological, and emotional challenges around sex and intimacy, and provided some practical strategies and tools for both individuals and couples.

Jillian Rose started the presentation by explaining the importance of starting a conversation about sexuality and intimacy. "It can be uncomfortable, and we don't want to talk at you; we want to talk with you about this topic," Rose said.

Rose outlined the different points she wanted to touch upon, including: test

  • Don't Ask, Don't Tell
  • Defining Sexuality and Intimacy
  • Factors Influencing Sexual Function and Intimacy
  • Coping with Symptoms
  • Tips to Create Open Communication, and 
  • Dealing with Some of the Issues Surrounding Sexuality and Intimacy.

Rose opened the conversation by asking, "What is sexuality to you? When you hear 'sexuality,' what does it mean to you?"

"A loving, physical closeness with another person," one member of the audience replied.

"Creating a balance for yourself," said another.

Rose agreed with both definitions. "Sexuality can be all those things. Sexuality can be all those wonderful attributes that make up who you are in the roles that you're in, for example, as a partner, as a lover, as a friend, as a husband, and as a wife; it encompasses many things. It's not only the aspects of sex."

Rose asked another question: "When we say the phrase 'Let's get intimate,' what does that mean?"

One member said, "closeness." Another said, "connection."

Rose explained that intimacy is not only a physical connection; it also includes social, emotional, mental, and spiritual aspects. Intimacy involves you as whole person -- how you perceive yourself and how you share yourself with others.

Don't Ask, Don't Tell

Sexuality is often overlooked as a topic of discussion in the healthcare system. Rose asked members: "How many of you have been asked by your rheumatologist, 'How is your sex life? What is going on with you?' How many of you have ever had that experience?"

Rose explained how infrequently sexuality or sexual functioning is addressed with patients. Doctors, social workers, and nurses don't routinely ask patients questions related to their sexual activities. Sexual functioning is not normally a part of a routine physical exam, so it is rarely brought up during the exam.

In a 2009 study, Antonio G. Tristano interviewed about 10 rheumatologists who had large rheumatology practices, and only 12 percent of these surveyed said they assessed for sexual functioning.(1) "That is a very, very low percentage of rheumatologists with large practices who saw over 500+ patients," said Rose. "Only 12 percent really assessed for sexuality. Therefore, it clearly shows that we're not talking about it."

Why are Professionals Silent and Why are You and I Silent?

Professionals are often silent about sexuality and intimacy because they are limited in time during one medical visit. They're not able to talk to each patient about their sexuality in addition to questions about their medication and treatments.

That makes the issue of sexuality "kind of abstract and 'out there' and not really a part of you," Rose said.

The other reason might be that the subject can be uncomfortable. Professionals are not sure if it is their right to ask and are often ambivalent: "Am I supposed to be talking about this? Is this my role? Who is supposed to be having this conversation? I know things are happening and I know this exists, but am I supposed to assume the role with this patient?"

Also, a lot of physicians are not trained in this area, so they feel they can't address it.

Patients' Feelings: How About Us? How Do We Feel?

Patients feel discomfort when approaching the subject as well, even though they see sexualized images all the time in the media and elsewhere in their daily lives.

"Yes, sex as a topic is still taboo and uncomfortable for many of us," Rose noted. "That may come from cultural influences, how we were brought up, the society we live in, and how our parents display affection."

Fear, she suggested, is another factor. A patient may think that it is best to keep this issue to themselves since it's a personal issue and they are afraid of how people are going to react if they discuss such issues.

Impact of Lupus on Sexuality and Intimacy

Sexuality in those with lupus is impacted in two primary ways: physical and emotional.

Physical Effects

Physical symptoms may include the following:

  • Pain
  • Fatigue
  • Swelling
  • Stiffness
  • Rashes
  • Headaches
  • Hair Loss
  • Temperature Changes (Raynaud's Phenomenon)
  • Treatment Side Effects

There are other factors that may impair sexual function:

  • Vaginal dryness
  • Vaginal tightness
  • Reduced libido
  • Hormonal imbalance
  • Distress with orgasms
  • Limited mobility
  • Impotence

Studies that look at some of the symptoms:

Fatigue and pain are two of the main reasons individuals refrain from engaging in sexual intercourse, according to a 2004 study.(2) Rose explained that when a person is feeling these symptoms, they might not really want to be involved in such activities. The same study shows that the pleasure of intercourse can be diminished by pain of joint movement or difficulty in finding a position that does not cause discomfort. Another study shows that "difficulties in sexual performance [are] related to overall disability and hip involvement while demised desire and satisfaction were influenced more by prevalent pain, age, and depression."(1)

Curry, et al (1994) did a study of 100 lupus patients and 79 non-lupus patients, and asked lupus patients to also bring their friends with lupus. They were matched up by age, job, and education level. The control patients didn't have lupus. In the study, lupus patients reported more gynecological problems such as missed periods, more menstruation, and vaginal infections in the past month than normal controlled patients without SLE. She also found that a number of gynecological problems were significantly correlated with diminished lubrication, subjective arousal, and low satisfaction.(3) SLE had a significant impact on satisfaction of patients if they felt aroused or not.

In other studies, it was found that stress of a chronic illness can reduce vaginal moisture (1) and that Raynaud's Phenomenon can affect the tongue and nipples.(2)

In one of the studies, decreased libido, erectile dysfunction, and failure to ejaculate was reported in 19-35 percent of men with SLE.(2)

While anti-rheumatic drugs do not generally impair sexual activity, impotence has been described in several patients treated with methrotrexate. Medications used for pain or inflammation, such as methotrexate and naproxen (Naprosyn®), have rarely been described to adversely influence ejaculation in men. Drugs that treat rheumatic illnesses such as SLE are less likely than the disease itself, or a person's reaction to the disease, to be the cause of sexual dysfunction. However, since medications can have such effects for some people, if your sexual function has changed, ask your rheumatologist if any of your medications might be related. 

A study done with 169 rheumatoid arthritis (RA) patients found that about half of patients surveyed lost sexual desire during the course of their illness. Sixty percent of those RA patients were dissatisfied with the quality of their sex life, and sexual dysfunction was experienced equally by both male and female patients.(2)

We can see over time that patients with rheumatic illnesses such as RA or SLE may lose interest in participating in sexual activities and satisfaction. Also, men and women with SLE don't discriminate in terms of how they experience sexual dysfunction at similar levels.

Tips to counteract physical symptoms:

  • Deal with main triggers such as pain and fatigue
  • Plan sexual activities when pain is mildest (e.g., plan them 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)
  • Make sure you place yourself in a comfortable position (e.g., a spooning position that takes pressure off painful areas of your body)
  • If you experience vaginal dryness or a yeast infection, talk to your doctor
  • Encourage foreplay and massage, which gives your body time to respond to stimuli

Decreasing the Impact of Lupus Symptoms with Raynaud's Phenomenon:

  • Avoid being in a cold room to reduce discomfort
  • 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 any pressure on hands and feet
  • Most importantly, make sure you're well rested before engaging in any activities. For example, a nap beforehand can be very helpful. Make sure you're rested so you can have the best experience for yourself

Emotional Effects and Psychological Factors

Sexual intimacy is not only impacted physically, but emotionally. Some effects include the following:

  • When an individual is experiencing pain, vaginal tightness, limited mobility, and other physical symptoms, the effects impact their desire and interest and might not make them enthused to participate in sexual activities. 
  • Body image: SLE changes the body, either causing one to gain or lose weight, lose their appetite, or experience other problems related to their illness, such as a deformity of the hand, losing hair, or anything that can change one's body image and perception of self. 
  • Self-esteem: Some people might have to leave their jobs, among other things, and might not feel as self-confident and worthy.
  • Depression: Related changes in one's appearances, worries about partner interest, and other challenges can be depressive side effects related to illness.

Many studies show that having a good sexual and intimate lifestyle can lead to a healthy self image. Physical problems, emotional problems, and partnership difficulties that come from stress related to the disease can reduce the quality of one's sex life. There can also be a weight concern that is associated with lower sexual activity. Patients were found to experience depression and express greater concern for their bodies.

Rose shared that it is crucial to understand that the largest factor leading to sexual dysfunction is not physical.

In one study, four percent of SLE patients experienced problems with sexual functioning. Twenty percent experienced problems with their self-image.(1) It is important to think about how you perceive yourself in your own environment, in relation to your partner and family. It has a big impact on your sexual functioning and sexual satisfaction.

Several studies show that patients with SLE withheld from having intimate relationships and abstained from sexual activities. One study shows that a large number of patients abstained from any sexual activities including petting, intercourse, and masturbation. The study also showed that African American woman usually cut off sexual relations when faced with medical challenges. Additionally, the frequency of sexual activities was lower among women with SLE. For example, when compared to a control group of women without SLE, women with SLE engaged in sexual activities an average of two thirds as frequently as the control group.(3)

An important reminder is recognizing that sexuality and intimacy is about the "entire person."

Body Image and Self-Esteem:

You need to have a positive attitude about sexuality and yourself. For example, some may feel that their sexuality is defined by their hair, and they lose all their hair because of their illness. According to Rose, it's about changing your perception and being more open-minded.

Rose presented an example:  Every year, Hospital for Special Surgery - in collaboration with the SLE Foundation - organizes "Healthy Day" to encourage and invite women with SLE to a day featuring pampering with hair and make-up. They encourage SLE women to come and dress and look pretty. This really helps build their self-esteem. "Defining attractiveness and beauty for your own self," Rose explained.

Tips for Health Care Professionals:

  • Seventy-two percent of SLE patients have responded that their rheumatologist should ask about their sexual function in all visits, and 82% felt that they should be informed about the impact of the disease in regards to their sex life.(3) It was found that 77% of patients with rheumatic issues welcomed their physician's inquiry about any sexual concerns, but only 22% recall receiving such an inquiry.(4)
  • Open communication: Have a place for patients to address concerns without feeling embarrassed. Discuss the problems with the partner, and have them talk about it.
  • Information about the nature of this illness can affect the person's sex life. In routine exams, patients want health care professionals to "weave in" the information. An SLE patient's health status can be improved through social support and satisfaction with a health care team such as LupusLine®, LANtern®, Charla de Lupus (Lupus Chat) ®, VOICES 60+, and VOICES Medicaid Managed Care. With their support, patients can talk about this issue.

Take-Home Points

Patients with RA with hip joint problems who may need a complete hip replacement can improve their sexual ability to pre-disease levels by 50%.(1) Women with SLE who experience mild sexual impairment can be easily treated, especially if their disease is under control.(3) For other patients, there are other ways to maintain a sexual life that does have to do with sexual intercourse. For example, alternative positions or oral/genital stimulation can increase pleasure.

Rose ended her discussion with a quote from a 2008 study by Sage Bolte, MSW: "We, as human beings, crave interaction. We have a natural desire to be touched, hugged, caressed, and loved, whether this is fulfilled by a partner or close friendships. Most people desire close relationships that involve intimacy at some level. Sexuality and intimacy are not life or death issues but are very real quality of life issues."(5)

Impact of Relationships on SLE Patients

During her section of the discussion, Ms. Rose asked the group, "What kind of physical symptoms impair sex and intimacy?"

"It wasn't about the physical impairment," was one response. "It was more about thinking if my partner was going to leave me."

"Am I going to find someone to be in relationship with?" another responded. "Is anyone going to feel that I am a burden because of my illness?"

For the second part of the discussion, Rose introduced Suzy Kim, LCSW, to speak about these issues and others involving the impact of relationships on SLE patients.

Kim showed a cartoon that addressed the issues that couples deal with over time. Things start to pile up: bills, finances, the loss of jobs, taking care of children. All couples have problems managing some aspect of their life, not only just those with chronic illness.

Kim pointed out that sex is a good thing. Studies have shown that sex can reduce the risk of death, reduce stress, improve sleep, and help to cultivate a satisfying relationship. Kim further explored issues of couples and addressed some questions that help reveal an individual's mentality towards sex.

Key questions to ask yourself:

  • Are you comfortable talking about sex?
  • What are some of the sexual messages you received growing up? (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?

Kim emphasized that intimacy is the emotional, social, mental, and spiritual sharing we have with a person. SLE is one of the things that can affect a couple's life, but there are so many other factors such as stress, illness, children, infidelity, employment changes, financial, mental and emotional well-being, other acute traumas, and growing old together.

Impact of SLE on a Couple

Roles and responsibility changes can often affect a relationship. Lupus patients might say, "I was doing really well. I had my job, and we're both working. Now, I don't have my job anymore, and I have no control. So my partner will become responsible in that area."

It's just the nature of the balance of the relationship that, more often, the individual with the chronic illness will have feelings that they are bringing less to the table than their partner.

When an SLE patient has a flare up, it can cause feelings of guilt, shame, anxiety, resentment, and/or blame. He or she may think, "I feel bad/guilty/selfish for asking for what I want. I don't know how to bring it up in a conversation because the children are there." At other times, the individual might not be feeling well but may still want to be touched.

As Dr. Patricia Love emphasized, "Good verbal communication is the key to good sex." Couples should share their emotions and explore their sexuality.

First steps include the following:

Communication:

  • 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're 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.

Actions:

  • Find a neutral place at home to start a conversation. 
  • Build in a set time to talk and check in so that you're not talking only when problems arise.
  • Couples can get busy, so it is important to spend quality time with each other away from your children and responsibilities each week. (Even building 20-30 mins together, like taking a shower together in the morning). Create a ritual.

Strengthening your emotional and physical intimacy:

Kim introduced the term "sensate focusing," which is often used in couples therapy. She then explained the importance of this method. 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 have achieving orgasm be the goal. This really takes away from the stress of needing to have an orgasm.

Exercise for couples that can be done at home:

  1. Decide who can be the giver or receiver.
  2. Receiver can close their eyes or be blindfolded (if preferable.)
  3. Giver can explore their partner's body with their lips, hands, and tongue, and avoid genital contact.
  4. Receiver will share what areas of sensations feel good.
  5. Give each other enough time to really experience both roles, being a giver and receiver (10-15 mins each).

It is important to recognize that intimacy is not just sexual intercourse, but that there are many other ways to express love and connection, such as:

  • Touch: Exploring your partner's body, which can include holding hands, cuddling, stroking, kissing, etc.
  • Self-Stimulation: Masturbation is normal and healthy. And this can even occur during a sexual activity with a partner.
  • Oral Sex: Can be seen as an alternative or supplement to intercourse.
  • Different Positions: Change your positions, such as kneeling or sitting. You can go online or to the library to get additional resources.
  • Vibrators and Lubricants: Adding pleasure without any physical contact. If there is an issue with vaginal dryness, you can purchase an over-the-counter lubricant.

Important factors to take home:

  • 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, don't get discouraged, and keep trying.
  • If you need additional guidance, seek help from a therapist or specialist.

Kim ended the presentation with an important quote from Amy Bloom: "Intimacy is being seen and known as the person you truly are."

 

Learn more about the HSS SLE Workshop, a free support and education group held monthly for people with lupus and their families and friends.

 

Additional Resources

Ackerman Institute for the Family, 149 East 78th Street, New York, NY 10075, 212.879.4900, http://www.ackerman.org/

Imago Relationship International: http://www.gettingtheloveyouwant.com

American Association of Sexuality Educators, Counselors and Therapists (AASECT): http://www.aasect.org/

Arthritis Care UK, "Relationships, Intimacy, and Arthritis" (downloadable booklet near bottom of this page)

 

References

1. Tristano, G. A. (2009). The impact of rheumatic diseases on sexual function. Rheumatol Int.10.1007

2. Østensen, M.( 2004). New insights into sexual functioning and fertility in rheumatic diseases. Best Practice & Research Clinical Rheumatology 18,pp.219-232.

3. Curry, L.S., Levine B.S., Corty, E., Jones, K. P. and Kurit M.D.(1994). The Impact of Systemic Lupus Erythematosus on Women's Sexual Functioning. The Journal of Rheumatology 21:12,pp.2254-2260

4. Blake,DJ., Maisiak, R., Graciela, S. et al.(1987) Sexual quality of life of patients with arthritis compared to arthritis free controls. Journal of Rhumatology 14:pp. 570-576

5. Bolte, S. The impact of Lupus on sexuality and intimacy. Lupus MD. Retrieved March 17, 2009.

Summary by Lay Tep, Social Work Intern

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