If you have lupus, you know how it can wear you down. Pain and tiredness can make it difficult to function. It can affect your personal life. Your partner may be trying to understand what you are going through. Perhaps you are both trying to work around closeness and sex concerns. You can have that closeness you shared before. It takes open communication and a willingness to explore.
Lupus can cause tiredness, hair loss, rashes, and joint pain. Some lupus medicines may cause weight gain. Other medicines may lower your interest in sex. Living with a long term disease can also cause depression. Any of these things may make you feel unattractive or unwilling to have sex.
Some people with lupus have Raynaud’s phenomenon. This is a condition in which blood vessels spasm. It can happen in cold temperatures or with strong emotions. This can lead to blocked blood flow to the fingers, toes, ears, and nose. It causes numbness or pain. During sex, there is more blood flow to the genitals and less to other parts of the body. This can also cause the numbness and pain.
Other physical problems that may affect sex are:
Your partner may also be feeling uneasy. This can happen for many reasons. Your partner may not understand what you are feeling. It may be due to the physical problems you have. Your partner may worry that you have lost interest or attraction. On the other hand, it may be the opposite. Maybe you feel that your partner is avoiding you. The truth may be that your partner does not know how to approach you.
There may be awkwardness, hurt feelings, and doubts. Even so, you and your partner can have closeness again. It begins with good communication.
Talk to your partner about your feelings. You may find that the negative views you have about yourself are not true. Talking with your partner may also maintain feelings of love—whether you have sex or not.
Also, keep a journal to write down your feelings. Do this at different times of the day. Note when you have the most energy. When alone, take time to explore your body. Find what feels good and what hurts. Be aware of what is going on with you and your body. Share this information with your partner.
When you are ready for sex, try these steps:
Not everything has to lead to sex. You can still get close with your partner. Try giving each other gentle massages. Tender touching , kissing, and loving embraces can help you feel close. However, if you try different things and still feel distant, consider getting help from a licensed therapist.
There will be ups and downs. Work on staying positive. Be confident about how you look and who you are. This is important in maintaining sexuality. With time, patience, and communication the closeness will return.
Lupus Foundation of America
Lupus Research Institute
Ontario Rheumatology Association
Can I have a normal sex life with lupus? Lupus Foundation of America website. Available at: https://www.lupus.org/resources/can-i-have-a-normal-sex-life-with-lupus. Accessed October 22, 2021.
Improving intimacy and sexual health in your relationship. Lupus Foundation of America website. Available at: https://www.lupus.org/resources/improving-intimacy-and-sexual-health-in-your-relationship. Accessed October 22, 2021.
Lupus and intimacy. Kaleidoscope Fighting Lupus website. Available at: https://kaleidoscopefightinglupus.org/lupus-and-intimacy-2/. Accessed October 22, 2021.
Systemic lupus erythematosus (SLE). EBSCO DynaMed website. Available at: https://www.dynamed.com/condition/systemic-lupus-erythematosus-sle-in-adults. Accessed October 22, 2021.
Last reviewed October 2021 by EBSCO Medical Review Board
Last Updated: 10/22/2021