This article originally appeared on my Diaries of a LupusChick column on LupusNewsToday.com
I think learning how lupus can permeate every aspect of your life is one of the most frustrating and challenging aspects of dealing with the disease. Unfortunately, intimacy and our sex lives typically take a hit at some point. Maintaining a certain level of intimacy with your partner while living with a chronic illness like lupus is sort of like walking on a tightrope — things can so sideways very quickly.
For many of us, severe fatigue and pain throughout our body can diminish any interest we have in being intimate. Lack of interest altogether also occurs and might be due to side effects from different medications. When you couple these realities with self-image-related challenges such as weight gain from steroids, hair loss, and physical symptoms such as rashes or scarring, the last thing you have is a catchy romance song from Marvin Gaye.
So how can we still engage in intimacy and physical contact, and get the connection we all need as humans without making our lupus symptoms worse? Following are a few pieces of advice that have worked for me:
Know that your words carry great weight
Communication is key in all relationships, especially the one with your significant other. With lupus, I deal with sudden moments of horrible fatigue, sudden pain, or general loss of interest in just about anything. At first, I never really expressed these things the way I should have with my husband, and he was left feeling as though it was a rejection of him. When I learned how he perceived it, I felt terrible. My loss of interest had nothing to do with him — he is an incredible husband in so many ways — but rather, weeks or months of pain, weakness, and fatigue were leaving me with zero spoons for anything else.
When you communicate with your partner, it gives them a clear picture of what is going on. Ideally, they realize that forces beyond your control often dictate the things you do … and don’t get to do. Once the lines of communication are open, you are free to discuss alternatives for the moments when you aren’t physically up to being intimate.
Make peace with less spontaneity
No one wants to schedule their intimacy time like they do doctors appointments, but it is wise to determine the best times for intimacy for your body. Personally, I get my greatest “bursts” of energy very late at night or early in the afternoon. By midday and early evening, I am typically at my worst — exhausted and sometimes experiencing a fever. It’s around this time that I will take a nap, which provides me with enough energy to get through the rest of my day.
Knowing this, I try to take advantage of these moments that I have a little more energy than normal, and will spend it connecting with my husband in some way, whether physically, verbally, or emotionally.
There are times that sex is out of the question for a lupus patient. And while this can be a downer, there are options. When I have severe muscle and joint pain, my husband and I love to soak in our large Jacuzzi tub and just talk. We alternate back or leg massages, light some candles, and listen to some of our favorite music, or just talk. It is a different level of intimacy, but one that blocks out the entire world and just allows us to focus on each other. For you, this alternative may be lying in bed with one another, talking, kissing, or trading massages. Sex is only one level of intimacy so get creative for the moments when sex will not be in the cards.
Combat dryness or sensitivity
It isn’t uncommon for some people with lupus to experience dryness or sensitivity, which can stem from a variety of factors such as medication side effects, disease activity, etc. Be prepared ahead of time to prevent painful intercourse from dryness by using a good lubricant. While there are many on the market, I prefer water-based lubricants for any issues with dryness. One of my favorites that I found a few years ago is by SYLK, which is made in New Zealand using kiwifruit extract. I love this product because it is great for dryness in general and doesn’t leave you feeling sticky. Plus, it isn’t loaded with a long list of chemicals I can’t pronounce, which is important to me when putting things on my skin.
What are some things that help you keep intimacy alive in your relationship? Tell us in the comments!