If you have lupus, you know all too well how it can wear you down. The pain and fatigue can make it difficult to function. Perhaps the condition has started to affect your personal life. Your partner may be trying to understand what you are going through, and perhaps you are both trying to navigate issues around intimacy and sex. Can you have that intimacy you shared before? Yes—with open communication and a willingness to explore—you can.
What’s Going On
The physical symptoms of lupus—feeling extremely tired, hair loss, rashes on the face, and joint pain—may make you feel unattractive or unwilling to have sex. Also, the medications you take may make it more difficult for you to become sexually aroused and may decrease your sex drive. Some medications may also cause weight gain, which may also make you feel less attractive. In turn, you may have depression
because of the issues that come with living with a chronic disease
Some people with lupus may also experience Raynaud’s phenomenon
. This is a condition in which blood vessels spasm in cold temperatures or when strong emotions arise. This can lead to blocked blood flow to the fingers, toes, ears, and nose causing numbness or pain. During sex, there is more blood flow to the genital areas and less to other parts of the body, like the fingers and toes. This can cause the numbness and pain to occur.
Other physical problems that may affect sex are:
Your partner may also be feeling uneasy. This could be because of a lack of understanding what you are feeling, or because of the physical problems you have. Your partner may mistake your decreased sexual desire for a loss of interest or attraction. On the other hand, it may be the opposite. Maybe you feel that your partner is avoiding you, when the reality is an uncertainty of how to approach you without adding additional stress to an already sensitive situation.
Despite the awkwardness, hurt feelings, and doubts, you and your partner can regain intimacy with one another. It begins with good communication.
Finding Intimacy Again
Communicating with your partner may help you realize that any negative perceptions you have about yourself may not be true at all. Talking with your partner may also maintain feelings of love, whether accompanied by sex or not.
Also, find time to be alone to write about your feelings during different times of the day or week. Keep a journal noting the times when you feel you have the most energy. When alone, take time to explore your body. Find what feels good and what hurts. The point is to be aware of what is going on with you and your body. You can share this information with your partner.
When you and your partner are ready for intimacy, there are some things you can both do to make the experience more pleasurable.
- Use pillows for support. Pillows placed in the right spot may help to relieve painful joints.
- Use water-soluble personal lubricant if you have vaginal dryness.
- Experiment with positions until you find those that are less painful.
- Consider experimenting with forms of touch that may be stimulating other than intercourse.
- Take a warm shower or bath together to help relieve sore muscles and joints.
- Take an anti-inflammatory medication an hour before having sex. This may also pain relief.
- Try to take a nap before sex. Feeling rested may give you more energy.
- If you have genital or mouth sores that make sex painful, ask your doctor about the best way to treat them.
Not everything has to lead to sex. You can still get close and have a special connection with your partner without sex. Giving one another gentle massages, touching one another tenderly, kissing, even a loving embrace can spark intimate feelings. However, if after trying different ways to regain intimacy, you both still feel distant, consider getting help from a licensed therapist
. She may be able to provide other channels for communication and methods.
The important thing to remember in all the ups and downs: stay positive! Be confident about how you look and who you are. This is important in maintaining sexuality. With time, patience, and communication the intimacy will return.
Lupus Foundation of America
Lupus Research Institute
Lupus Foundation of Ontario
Handout on health: Systemic lupus erythematosus. National Institute of Arthritis and Musculoskeletal and Skin Diseases website. Available at: http://www.niams.nih.gov/Health%5FInfo/Lupus/default.asp. Updated May 2013. Accessed October 2, 2013.
How will lupus affect my family? Lupus Foundation of America website. Available at: http://www.lupus.org/answers/entry/how-will-lupus-affect-my-family. Accessed October 2, 2013.
Lupus and intimacy. SLE Lupus Foundation website. Available at: http://www.lupusny.org/about-lupus/newsletters/march-april-2008/lupus-and-intimacy. Accessed October 2, 2013.
Wojcik E. Staying close: when a mate has lupus, keeping intimacy alive takes special care. Lupus Now Magazine. Lupus Foundation of America website. Available at: http://www.lupus.org/webmodules/webarticlesnet/templates/new%5Fmagazineback.aspx?articleid=2703&zoneid=67. Accessed July 29, 2011.