By Katarina Zulak
If you’re like me, then how you share intimacy when you live with chronic illness is different than in your life before chronic illness. This isn’t necessarily a negative – it can bring positive change. For example, maybe you focus more on your intimate connection now instead of being on autopilot. But what do you do if your sex life isn’t the way you wish it could be?
People living with chronic illness can face a number of intimacy challenges, the most obvious being physical challenges, such as pain, fatigue or medication side-effects. The caregiver/cared-for dynamic can also impact intimacy between partners; the person living with chronic illness may feel like they are being treated like a child and miss relating adult-to-adult. In addition, living with chronic illness can reduce self-esteem, or cause anxiety, grief or depression.(1)
For example, one study found that, compared to healthy controls, women with fibromyalgia reported lower levels of sexual desire and satisfaction, as well as greater body pain before, during and after sex. Low levels of emotional health and well-being were associated with facing greater sexual problems. Interestingly, higher levels of pain were not associated with greater sexual problems.(2)
For me, one of the biggest obstacles to intimacy was not feeling comfortable in my own skin, or being able to move expressively. In order to kiss my husband comfortably, I have to stand back a few inches. I can’t pull him close and wrap my arms around his neck without the arching in my upper back becoming too painful. It was hard for me to feel sexy with these movement restrictions. Another significant challenge was the grief I felt about losing my old self, including my old sex life. This is a natural reaction to the changes of chronic illness and can happen for both partners. Couples with similar experiences may then avoid expressing their sexual desires so they don’t bring up these painful feelings.
What is Mindfulness?
“Mindfulness is awareness that arises through paying attention, on purpose, in the present moment, non-judgmentally,” according to Jon Kabat-Zinn(3), a pioneer of mindfulness in medicine. Being mindful means intentionally being present with your breath, thoughts, feelings and sensations. Inevitably, your mind will become distracted by worries, memories, or plans. This is an opportunity to begin again, by gently guiding your awareness back to the present moment. You can practice mindfulness through meditation, body scans, mindful eating, or mindful movement like yoga or Tai Chi all of which, will in turn help you practice mindful touch (See the resource list below for a list of free guided practices).(4)
What is Mindful Touch?
Mindful touch is simply the same practice of conscious awareness, focused on the sensations of giving or receiving touch. There are a number of ways the partners can practice being present with the sensations of giving and receiving touch, like massage, applying lotion or washing each other in the shower. Remember, the goal isn’t to give a great massage that relieves your partner’s shoulder pain but to pay attention to your physical contact, moment-to-moment. Couples switch giving and receiving touch. (You can find a more detailed description of the practice in the resource section below).(5)
Mindful touch can evolve into mindful sex, but it is helpful to practice focusing on the sensations of touching first. Mindful sex is about focusing on the sensory experience and not pursuing sexual goals, like orgasm.
If you are single or prefer to practice on your own, the mindfulness practices listed above are a good place to start, especially the body scan. Self-touch practices can include practicing mindfulness as you wash yourself. These techniques can also be used during solo sexual exploration.
A more formalized approach is called sensate focus, which was developed by early sex researchers Masters and Johnson. “Sensate Focus is a set of exercises geared towards couples where the focus of sex is shifted from pursuing orgasmic outcome, to a slower appreciation of physical intimacy and sensations.”(6) A link to sensate focus exercise can be found in the resource section below.(7) These exercises gradually become more sexual as they progress. Communication is also important here; after each session couples are encouraged to share feedback on what they preferred.
Why Try Mindful Touch?
We know that chronic pain or illness is often related to depression or anxiety, which in turn increases sexual problems.(2) Mindfulness practice has been demonstrated in many studies to reduce psychological stress, depression and anxiety.(8) Anxiety is often about worrying over the past or imagining future problems. When it came to intimacy, I would make negative comparisons between intimacy before and after chronic illness or imagine that being intimate might become too painful or stressful. The practice of staying present with each touch sensation rather than the past or future helped to significantly reduce these anxieties. When negative thoughts or feelings arise during intimacy the aim is to let them pass, like clouds being blown across the sky, rather than pursue them. I realized that, ironically, it was worrying about future pain and not pain itself that ruined the pleasure of closeness in those moments.
Mindful touch can help us to tune into the positive body effects of touch. Touch reduces the stress hormone cortisol, and increases the release of oxytocin, the ‘cuddle-hormone’, which makes us feel closely connected to our partners.(9) Mindful touch allowed me to remember what sensuous connection felt like, which in turn helped me to feel sexy again. Focusing on pleasurable sensations can help to promote sexual arousal,(10) the most common sexual challenge for women with fibromyalgia.(2) Focusing on sensory experience rather than orgasm can help reduce sexual problems: “When individuals get anxious about reaching that goal, they often miss out on the joys of simply being with their partner and taking the time to experiment with touching and feeling the many parts of their partner’s body.”(11) Mindful touch enabled me to just focus on enjoying closeness here and now, however I am able to.
Mindfulness can also increase body awareness. Being more aware of sensations can help us to make better choices for our comfort and wellbeing. Choices like whether standing, sitting or lying are more comfortable, what type of touch feels best, the degree of pressure, and any other changes that might need to be made. Communication during and after mindful touching can help you and your partner to be more responsive to what your body tells you. If you are in pain and receiving touch, this is a tip that helped me: focus on how your partner’s hands feel rather than how their touch makes your skin feel.
Mindful touch is a great tool for strengthening the intimate connection we share with our partner and enjoying the pleasure of closeness; helping us to have the sex life we want, even when we live with chronic illness.
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Free guided mindfulness practices: Free Mindfulness Project. (n.d.). Free Resources.
A more detailed description of how to try Mindful Touch: Darnell, C. (2015). 7 Ways Mindful Touching Will Make Your Sex Life Better. MindBodyGreen.
A more detailed description of Sensate Focus: Counselling Matters (n.d.). Resources: Sensate Focus PDF.
1. McInnes, R. (2003). Chronic Illness and Sex. MJA 179: 263-266.
2. Prins, M., Woertman, L., Kool, M.B. and R. Geenen. (2006). Sexual functioning in women with fibromyalgia. Clinical and Experimental Rheumatology 24: 555-561.
3. Mindful. (2016). Jon Kabat-Zinn: Defining Mindfulness. Retrieved 10 Sept 2016.
4. Free Mindfulness Project. (n.d.). Free Resources. Retrieved 10 Sept 2016.
5. Darnell, C. (2015). 7 Ways Mindful Touching Will Make Your Sex Life Better. MindBodyGreen. Retrieved 10 Sept 2016.
6. Jarvis, B. (2014). Great Sexpectations: The Power of Mindful Sex. Kinsey Confidential. Retrieved 1 Sept 2016.
7. Counselling Matters (n.d.). Resources. Retrieved 10 Sept 2016.
8. Williams, M. and Penman, D. (2012). Mindfulness, NY: Rodale. p.6.
9. Trudeau, M. (2010). Human Connections Start with a Friendly Touch. NPR. Retrieved 10 Sept 2016.
10. Smith, J.A. (2015). What’s mindfulness got to do with sex? Mindful. Retrieved 10 Sept 2016.
11. SexInfoOnline. (2010). Sensate Focus. Retrieved 10 Sept 2016.
Katarina Zulak is a health coach and ePatient blogger. Five years ago she was diagnosed with fibromyalgia. On her health journey, Katarina has learned about the power of self-care skills to improve her health and well-being. She obtained her health coach certification from the Sears Wellness Institute as a way to channel her passion for partnering with others working to improve their wellness. On her blog, Skillfully Well & Painfully Aware, she writes about learning to be skillfully well, even when living with a chronic condition. Katarina lives in Toronto, Canada with her husband and their cat Lily. She loves learning, reading, being outside, Netflix, calligraphy and coffee!