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.
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.
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.
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 . A therapist 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_Info/Lupus/default.asp. Updated February 2015. Accessed July 10, 2015.
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. Updated July 9, 2013. Accessed July 10, 2015.
Lupus and intimacy. SLE Lupus Foundation website. Available at: http://www.lupusny.org/about-lupus/newsletters/march-april-2008/lupus-and-intimacy. Accessed July 10, 2015.
Last reviewed June 2015 by Michael Woods, MD
Please be aware that this information is provided to supplement the care provided by your physician. It is neither intended nor implied to be a substitute for professional medical advice. CALL YOUR HEALTHCARE PROVIDER IMMEDIATELY IF YOU THINK YOU MAY HAVE A MEDICAL EMERGENCY. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with any questions you may have regarding a medical condition.
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