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Lupus and Intimacy

Introduction

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 paindepression 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 Kaleidoscope Fighting Lupus, we feel it is imperative to talk about this because it is rarely addressed and often avoided out of shame or embarrassment.  However, intimacy and sexuality are important to understand because they are some of the primary ways that we as humans communicate.

Not only is it sometimes difficult to communicate your intimacy, desires, and setbacks with your partner, but also it may feel exceptionally difficult to talk about them with your healthcare practitioner.  Have you ever spoken to your rheumatologist about intimacy issues?  Often, rheumatologists are so limited on time during your visit that they are not able to address intimacy and sexuality questions because they need to focus their limited time on treatments and lab results.  In a study published by the Hospital for Special Surgery (HSS), 10 rheumatologists, with large practices of more than 500 patients, were interviewed.  Only 12% rheumatologists said they routinely assessed patients 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 during 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 should be, but rarely is discussed. The importance of openly talking about lupus and intimacy may not only lead to a better understand about how each affects the other, but could also lower the barriers that may be hindering you in your own relationships. 

Defining Intimacy

Being intimate with someone, simply stated, means to be devoted to them in 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 many 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.
  • Touching.
  • Exploring a spiritual connection. 

The Physical Barriers to Intimacy

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 issues regarding physical barriers to intimacy:

  • Sjögren’s Syndrome:  Sjögren’s (pronounced SHOW-grin’s) is a chronic autoimmune disease that affects the entire body. 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, and is often characterized by widespread and chronic muscle pain and stiffness, extreme fatigue, problems with sleep, painful or tender spots on the body.  It is believed that fibromyalgia intensifies painful sensations by affecting the way that the brain processes the pain signals themselves.  This syndrome can cause significant pain and fatigue for months on end and interfere with a person’s ability to carry out daily activities, sleep or of course, intimacy.
  • Fatigue:  It is believed that 80% of lupus individuals will at one point or another deal with the too-tired-to-get-out-of-bed or out-of-spoons feelings that seems to strike at the most inopportune times.  Physical fatigue can affect your hand eye coordination, your balance and make it difficult to do anything physical, including being intimate.        

The Emotional Barriers to Intimacy

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 noticeable swelling and inflammation throughout your body.  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 even your role within your family or both.  These may affect your self-esteem and lead to feelings of worthlessness and lack of confident in who you are and what you can “bring to the table” in your relationships.   
  • Depression:  Grieving about your sudden life-change, worrying about your partner’s interest in you post-diagnosis, 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.  Even more, it may be all too easy to project those feelings onto those who are 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 also hinder intimacy. Back to top.  

Ways to Improve Intimacy

  • 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 sexually intimate, 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 can set mutual expectations.
  • Communicate: Communication is the key to emotional growth and a huge step toward 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…”

In Conclusion

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 healthcare practitioner.  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 healthcare 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 physical barriers are resulting in relational problems, it might be time to talk to a counselor or other healthcare professional.

 

References

Fields, L. (n.d.). Lupus, sex, and relationships. Retrieved from: https://www.webmd.com/lupus/features/lupus-sex-and-relationships#1
Druley, J. A., Stephens, M. A. P., & Coyne, J. C. (1997). Emotional and physical intimacy in coping with lupus: Women’s dilemmas of disclosure and approach. Health Psychology, 16(6), 506-514. http://dx.doi.org/10.1037/0278-6133.16.6.506
Gordon, L. (1969). Intimacy: The art of relationships. Retrieved from: https://www.psychologytoday.com/articles/196912/intimacy-the-art-relationships
Kim, S., & Rose, J. (2009). Lupus, sexuality and intimacy: Beginning a conversation. Retrieved from: https://www.hss.edu/conditions_lupus-sexuality-intimacy-beginning-conversation.asp
Maintaining intimacy between partners. (2018). Retrieved from: https://resources.lupus.org/entry/maintaining-intimacy-between-partners

 

Co-Authored by Kelli Rosetta and Liz Heintz. 

*All images unless otherwise noted are property of and were created by Kaleidoscope Fighting Lupus. To use one of these images, please contact us at info@kflupus.org for written permission; image credit and link-back must be given to Kaleidoscope Fighting Lupus. **All resources provided by us 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.    

Article by : Elizabeth Heintz

Liz Heintz is a technical and creative writer who received her BA in Communications, Advocacy, and Relational Communications from Marylhurst University in Lake Oswego, Oregon. She most recently worked for several years in the healthcare industry. A native of San Francisco, California, Liz now calls the beautiful Pacific Northwest home.