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Lupus and Intimacy

“Because a person with lupus may experience bodily and/or emotional discomfort brought about by lupus symptoms, medicinal side effects, stress, and feelings of depression, the thought of having sexual relations may not be foremost on the person’s mind on the same day or moment their sexual partner is “in the mood.”
- Donna Oram, When Lupus Throws You For A Loop

The act of intimacy with your partner encompasses behaviors such as touch, caressing, stroking, conversation, eye contact, empathy, selflessness, and sex. However, when you are living with a chronic illness such as lupus, intimacy can be particularly challenging due to the pain, fatigue, and other issues lupus can cause.

In this blog, we are going to address some of the physical, mental, and emotional challenges that may hinder intimacy between you and your partner. We understand that not everyone feels comfortable talking about this subject. However, our hope is to begin a conversation to destigmatize any shame or embarrassment surrounding intimacy and sexual health and lupus.

The Physical Challenges to Healthy Sexual Function and Intimacy

One of the most difficult experiences of having lupus is that you can feel like your body has been hijacked, not just from the physical manifestations of SLE, but medication side effects and the multiple other lupus overlap conditions that can occur.

Studies in patients with lupus have shown that individuals abstain from sexual activity, avoid intimate relationships, and reduce their engagement in sexual relations when faced with medical challenges from their disease. There are many factors that impact sexual function that can present in both women and men living with lupus.

Some of the most common interrelated factors, include:

  • The physical manifestations of disease

  • Medication side effects

  • Factors such as mood changes, negative body image, depression, and other insecurities

  • Sjögren’s syndrome which can cause vaginal dryness and painful intercourse

  • Rheumatoid Arthritis

  • Fibromyalgia

  • Raynaud's Phenomenon

  • Hormonal Changes

Generally speaking, the worse the lupus symptoms, the more it may hinder sexual function and intimacy.

In women, physical effects may include:

  • Decreased vaginal lubrication (more than half of women who have Sjögren’s syndrome have dryness of the vaginal area)

  • Pain from muscular-skeletal involvement

  • Limited range of motion in hips, knees, back, neck

  • Weakness in joints

  • Skin sensitivity

  • Mouth sores

In men, physical effects may include:

  • Chronic pain

  • Stiffness

  • Fatigue

  • Decreased libido

  • Higher rates of impotence

The Psychological and Emotional Challenges to Healthy Sexual Function and Intimacy

Though sexual intimacy can be impacted by physical factors, studies suggest that emotional factors are the leading causes of sexual dysfunction with people who have lupus. One study determined 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.

People with lupus may avoid sex due to psychological factors that include the following:

  • Unhealthy body image/low self-esteem

  • Lack of desire and/or interest

  • Depression and/or anxiety

  • Inability to focus/concentrate/climax

Unhealthy Body Image

As mentioned above, often with lupus you can feel like your body has been hijacked. The changes that can ebb and flow with lupus can undermine (to say the least) having a positive

body image. For example, you may gain weight from being prescribed corticosteroids. You may lose weight from medications as well. You may lose your hair from lupus or due to a medication used to treat it. Moreover, you may feel self-conscious because of a rash, or a mouth sore, or a joint deformity. All of these can affect your view of your body image and perception of self.

“Talk to yourself like you would to someone you love.” - Brené Brown

TIP: Commit to your body in positive ways, such as making time for self care that you enjoy. Remember your value is not based on a number on a scale. Surround yourself with friends and family who support, respect and encourage you.

Lack of Desire and interest

When a person is experiencing a significant amount of pain and fatigue, vaginal dryness, and other physical symptoms, it is completely logical and a normal response to be less than enthusiastic to participate in sexual activities.

TIP: Communicate with your partner. Couples who learn to communicate in an open, honest way usually maintain a stronger emotional connection, which can lead to better sex. Talking about your likes and dislikes, schedule times to be intimate, and be open to talking about trying new things.

Depression and Anxiety

25% of lupus experience major depression and 37% of lupus patients report having major anxiety. Clinical depression and anxiety may be a result of the continuous ripple effect of emotional and psychological stressors associated with living with a chronic illness. Unfortunately, It is rarely talked about with lupus because often there are so many other issues that are prioritized before a patient's mental health. 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.

TIP: Remember that fluctuations in sex drive are a normal part of every relationship and every stage of life. Spend some time nurturing yourself and your relationship. Make your mental health a priority, and talk to your doctor about your feelings.

From Your Partner’s Perspective

Unless you live in a bubble with no interaction with friends, family, or the outside world, your diagnosis will affect others around you. Individuals with lupus express concerns about whether their partner will leave them, no longer find them attractive, and view them as “damaged goods.” These concerns related to lupus may compound with other issues that couples deal with, including finances, boundaries with the in-laws, loss of jobs, stress of raising children, etc. All of this can have a detrimental effect on physical intimacy - not just on you, your partner may be feeling many different emotions as well.

Your partner is having to adjust to all the disease fluctuations that are happening to you too. Though a disease flare may bring about guilt, shame, anxiety, and resentment or blame on you, your partner may be internalizing some of the same feelings as well. In these times, your sexual relationship can suffer if you are both not honest in sharing these emotions constructively. Talking about sex can be challenging, especially if you’re not used to it. If you’re having trouble communicating with your partner, consider seeing a therapist.

Ways to Help Improve Sexual Function and Intimacy

Studies show that sex can reduce stress, improve sleep, and help to cultivate satisfying partner relationships. That is why it is important to address any issues that are hindering healthy sexual function and intimacy.

Here are some tips to make sex more comfortable.

  • Take a warm shower or bath to relax your muscles

  • Spend time on connecting through foreplay, touch, eye contact

  • Use a safe lubricant

  • Do Kegel exercises — this can increase blood flow and help with arousal

  • Try different positions or make physical adjustments, like using pillows for support

If sex is uncomfortable or painful, talk with your doctor. They can check for any additional medical conditions that might be causing problems and suggest therapies. It is also very important to talk to your partner about any discomfort during times of intimacy.