Back to basics: Four ways to rekindle the fire

Lupus Foundation of America

Resource Content

When you’re diagnosed with lupus, or any chronic disease, it’s natural to feel that your body has truly let you down. It’s not easy to think about being a sexual person when you’re dealing with pain, extreme fatigue, and side effects of medications.

You may experience a lack of desire. If you feel unable to satisfy your partner, you may also feel anxiety and guilt. At the same time, partners face the challenges of what to say, when to touch, and how to help—and they have desires and needs of their own.

All of these factors can impact even the strongest couples. The following strategies are provided by Certified Rheumatology Nurse Practitioner Iris Zink, RN, ANP, RN-BC.

Four strategies for improving intimacy and sexual health in your relationship:

1. Communicate! The best way to learn about each other is to talk with your clothes on first. Start with what makes you aroused. Use the word  “I”: 
  • I like it when we…
  • I feel some pain when…
  • I would really like to try…  
2. Be open—with yourself, with your partner and with your provider.
  • If pain and fatigue are preventing you from feeling sexual, you can still enjoy intimacy with your partner. Explore non-sexual forms of intimacy like taking a walk and holding hands or taking a bubble bath together. 
  • Pain during intercourse can be due to different emotional or physical reasons. The first step is to find out what the cause(s) may be. If your health care provider or your nurse practitioner are not bringing up the topic, you should.
  • Get to know the sexual parts of your own body and your partner’s body.
3. Plan ahead. You may think it’s not very romantic to make a specific plan for intimacy, but the end result may change your mind!
  • Pick a day and time when both of you will be able to relax and focus on intimacy.
  • If you have children, arrange for them to be at a friend’s or family member’s house.
  • Consider a change of scene: Get a hotel room, or get out of town for a long weekend.
  • Most of all, make your time together a priority. It’s better to make a plan for intimacy and get some time together than to wait for things to arise spontaneously and end up not having any intimate time together.
4. Make it easier. Pain, lack of flexibility, and dryness can put a damper on sex. There are a wide variety of tools and products that can help.
  • Foreplay helps both mentally and physically. Try spending 30 minutes just exploring each other’s bodies.
  • Kegel exercises, done by tightening and releasing the pelvic muscles, increase blood flow to the vaginal area, making it easier to get in the mood. If you have joint or muscle pain or stiffness, a warm shower or bath can help you relax before you join your partner. Better yet, have your partner join you.
  • It may be necessary to use a vaginal moisturizer or sexual lubricant before or during intercourse—especially if you have Sjögren’s syndrome or you are post-menopausal. There are several options—talk to the provider you feel most comfortable with about your options.