Living with lupus can affect you physically and emotionally. It can also affect the way you view your self image, and how you feel (good or bad) about sex and intimacy. Fatigue, joint pain, depression and certain lupus medications may all interfere with a person’s interest in being intimate. Additionally, lupus and its treatments can cause changes with your body and affect the way you view yourself as worthy and desirable. At Molly’s Fund, we feel it is imperative to talk about this because it is rarely addressed and often shied away from. However, intimacy and sexuality are important to understand because those are some of forefront ways we, as humans, communicate.
Not only is it sometimes difficult to communicate your intimacy desires and setbacks with your partner, but it may feel exceptionally difficult to talk about them with your doctor. Have you ever spoken to your rheumatologist about intimacy issues? Often, rheumatologists are so limited on time in the room with you, that they are not able to address intimacy and sexuality questions because they need to focus the time on treatments and lab results. In a study published in 2009 by the HSS, 10 rheumatologists were interviewed who had large practices of 500 plus patients. In the study, only 12% said they assessed for sexual functioning. Yet, 72% of patients with systemic lupus responded in a similar survey that that they wished their rheumatologist would open the door to communicating about intimacy and sexual function in office visits. A resounding 82% also felt they should be informed about how lupus and lupus overlap diseases impact the disease in regards to their sex life.
The subject of lupus and intimacy is rarely talked about, but it is important to do so. Not only to understand the connection, but to help improve any barriers that may be hindering you in your relationships.
DEFINITION OF INTIMACY
Being intimate with someone, simply stated, means to be devoted to them through a deep, close and affectionate way. Being “intimate” doesn’t necessarily mean having sexual intercourse. However, sex IS a way of being physically intimate. There are both physical and emotional ways of showing intimacy. Here are some other examples of being intimate:
- Holding hands
- Looking into someone’s eyes
- Having a deep conversation
- Exploring a spiritual connection
There is no denying that intimacy and sexuality can be impacted by the physical effects of lupus and other lupus overlap illnesses. Here are some of the most common reasons for physical issues:
- Sjogren’s Syndrome: Sjögren’s (pronounced SHOW-grin’s) is a chronic autoimmune disease in which a person’s immune system turns against and attacks the body’s own cells. In Sjögren’s, white blood cells attack moisture-producing glands, such as the tear ducts and salivary glands, making it difficult for your body to produce saliva and tears. It also may lead to vaginal dryness leading to irritation or pain during intercourse.
- Rheumatoid Arthritis: Rheumatoid Arthritis (RA) is a chronic inflammatory condition and autoimmune disorder that generally affects the lining of the joints in your hands and feet. Rheumatoid arthritis causes a painful swelling that can eventually lead to deformity and erosion of your joints and bones. It can cause rheumatoid nodules (hard bumps of tissue under the skin along your arms), fatigue, joint and soft tissue tenderness and joint stiffness, making it challenging during sexual intimacy.
- Fibromyalgia: Fibromyalgia syndrome is a disorder that affects the muscles and soft tissues of the body. It is believed that fibromyalgia intensifies painful sensations by affecting the way that the brain processes pain signals. This syndrome can cause significant pain and fatigue and interfere with a person’s ability to carry out daily activities. It is often characterized by widespread and chronic muscle pain and stiffness, extreme fatigue, problems with sleep, painful or tender spots on the body.
- Fatigue: It is believed that 80% of lupus individuals will at one point or another deal with the tired-can’t-get-out-of-bed-can’t-move-out-of-spoons-feeling that seems to strike at the most inopportune times. Physical fatigue can affect your hand eye coordination, your balance. It can be difficult to do anything physical, including being intimate.
Intimacy and sexuality can be impacted by the emotional effects of having a chronic illness like lupus as well. Here are some of the most common issues:
- Body image: Your body image may change because of your lupus. You may gain or lose weight, lose hair, or have swollen body parts. You may experience rashes or sores, changes in posture, or lose the ability to groom yourself. You may go through times when you don’t feel physically attractive and all of this can affect the way you think, feel and the way you believe you are being perceived by your partner.
- Self-esteem: Sometimes a lupus diagnosis can result in a change of job or role. This can present as a hit to one’s self-esteem and may lead to feelings of worthlessness and not feeling self-confident in who you are and what you bring to the table in a either an established relationship or budding one.
- Depression: Grieving about your sudden life change, worrying about your partner’s interest in you now that you have lupus, and feeling insecure about your appearance, are only a few depressive side effects related to lupus. In fact, lupus itself can cause depression and anxiety. Those feelings are difficult not to project onto someone close to you.
- Side effects from medications: Some medications can alter a person’s libido, cause erectile dysfunction in men or vaginal dryness in women. Lupus medications can also cause hormonal changes in the body that affect mood, mental focus and energy level. Antidepressants and blood pressure medications have been linked to decreased sex drive, while antibiotics can sometimes result in yeast infections and vaginal dryness. Prednisone can most certainly alter someone’s mood and can cause anxiousness and irritability, which can hinder intimacy.
WAYS TO IMPROVE INTIMACY
- Explore a spiritual connection: If you and your partner share the same faith, you can use this to your advantage in terms of connecting and building intellectual intimacy. Spend a few moments of your day to pray for your partner, and with your partner. Some couples enjoy doing devotionals together or meditating together. If you come from different faiths or don’t identify with a specific faith at all, try exploring conversations about values and different powerful emotional experiences.
- Explore the power of touch: The use of touch is instinctive to humans to show signs of love and protection. Holding hands, hugging, massaging, touching hair, are all powerful (and underrated) ways of showing intimacy.
- Prepare ahead of time: If you have children, it may be helpful to arrange for them to be out of the house for a little while. Or, maybe a change of scene (hotel room, cozy lodge) might be nice! Also, try taking a nap, followed by a warm bath or shower before being intimate, it may help you relax and ease your pain. Remember to pick a day and time when you both will be able to focus on connecting on an intimate level and relax.
- Be open: If you are experiencing physical or emotional barriers that are preventing you from feeling sexual, be honest with your partner. Your partner may be open to other forms of intimacy while you take time to process your feelings. Taking a bath together or even taking a relaxing walk while holding hands, can help connect you and your partner. Moreover, If you are experiencing pain during intercourse, it is important to tell your partner about it, so you are on the same expectation level.
- Communicate: Communication is the key to emotional growth and a huge step to improving intimacy. Discussing things you are passionate about can help promote shared passions and desires. It also helps when you are being intimate to start with “I” statements. These include:
- I like it when we…
- I would like to try…
- I feel pain when…
- I feel uncomfortable when…
Lastly, if you feel that having sex or being intimate is physically impossible because of pain or fatigue, it is definitely time to talk to your doctor. If you don’t feel comfortable speaking to your rheumatologist about this matter, try reaching out to your primary care physician. If you are experiencing anxiety or dread about this issue, don’t feel bad. Those feelings are real, and health care providers are familiar with dealing with these issues. It could be something as simple as adjusting your medication, or exercise routine. It is very important to explore your partner’s feelings as well. If you feel like this issue is resulting in relational problems, it might be time to talk to a counselor or other health professional.
*All images unless otherwise noted are property of and were created by Molly’s Fund Fighting Lupus. To use one of these images, please contact us at [email protected] for written permission; image credit and link-back must be given to Molly’s Fund Fighting Lupus. **All resources provided by Molly’s Fund are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your medical provider with any specific questions or concerns.