The act of intimacy with your partner encompasses behaviours 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.
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 taken over, 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.
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. 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.
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.
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.
Having sex may feel and look different when you have lupus — but many people with lupus find that they can have a safe and satisfying sex life. Being on the same page as your partner is key.
This article is intended to inform and give insight but not treat, diagnose or replace the advice of a doctor. Always seek medical advice with any questions regarding a medical condition.