I have to start with a bit of a sidenote: I am well aware that my mother, children, and several good friends or family members read my posts here (hi, y’all!), which makes this an uncomfortable topic to broach. I also know, though, that a large number of us in the chronic illness community live with some kind of sexual dysfunction or difficulty. And I know how sparse information on this subject can be. So, putting on my big girl panties and half-hoping my family skips reading this particular post, I’ll dive in…

There are a great many things that can interfere with intimacy: pain, fatigue, weakness, loss of mobility, loss of sensation, autonomic dysfunction, and so many more factors. It can be frustrating and discouraging to face these challenges, especially since they’re often so personal and hard to discuss. If you are experiencing difficulties of any kind, I strongly recommend bringing it to your provider’s attention. There may be treatments, medications, or other things that can help you overcome some of the obstacles. For the rest, I hope these ideas and suggestions give you a starting point as you seek to find your way through the challenges.

Trademark Fragrance

When so much of our day is consumed with the host of symptoms, medications, treatments, doctor visits, and medical bills that fill our lives, it can be difficult to turn off the medical and turn on the intimate. I often say that I feel, at times, more like my husband’s patient than his wife. And that’s the last thing I want to be when we’re alone.

The sense of smell is such a powerful thing. Scents are often closely tied to our memories and emotions. For example, when I was pregnant with each of my children I chose a different lotion or perfume. I wore that fragrance throughout the pregnancy and early days after they were born. To this day, those smells take me back to the excitement of feeling them kick, the anticipation of meeting them, and the sweet moments snuggling my newborn. If you think about it, I’m sure you can think of a wide range of smells that take your mind to a specific memory, time, or person.

This is the perfect place to put that physiology to good use! I have a particular perfume that I wear when I am alone with my husband, whether it’s on dates, getaway weekends, or evenings at home together. I try not to wear it at other times, so that the scent is associated with him. When I wear it, my mind is flooded with memories of the times we’ve had together. And it signals something in my brain that says, “This time is different from all the others. This is a special occasion.” It’s amazing how well it works!

If you struggle to “get in the mood,” or have difficulty feeling like anything but a medical experiment, I strongly encourage you to try using scent to transport your mind away from all the distractions of chronic illness. Plan a shopping date with your significant other and test out different scents. Find something you both like, something that makes you feel attractive. I guarantee it will do wonders for both of you to help you get on the same page and clear your mind of distractions!

Preparing Yourself

Along the lines of using fragrance to set the mood, you may need to spend a little time shifting gears from the rest of the day to spending time with your partner.

If fatigue is a major obstacle for you, it can be helpful to take some time for a nap or to rest beforehand. Budget energy for intimacy, even if it means cutting out other activities during the day to save some steam (somewhat literally) for your partner. In my book, it’s always worth saving up! If you are typically exhausted by evening, consider carving out time earlier in the day, such as early morning or during the afternoon. Do whatever you can to rest and save up energy.

If you have a lot of pain or muscle stiffness, you might consider taking a warm shower or bath. This often helps relax muscles and ease pain, but it also provides a little time to decompress and mentally shift gears. It also helps you feel physically fresh and clean, which can be particularly important when you live with medical devices and effects of illness, medications, etc.

Another great way to get your body in the mood and ease pain is with massage. Ask your partner for a gentle massage to help you get ready, or take turns massaging one another. If you’re unsure how to give a good massage, or just want to improve your technique, consider looking for a couples massage class, an online course, or videos demonstrating techniques. If you or your partner aren’t up for giving a massage (after all, that can be tiring or painful too), look into handheld massaging tools, such as handheld neck massagers, foam rollers, or battery-powered massage seats.

It can also be helpful to dress the part. You don’t need to go all out (unless you want to!), but having one or two pieces of clothing or lingerie that make you feel confident and attractive can go a long way for both of you. Again, this signals your brain and body (and your significant other’s) that this time is not about your illness. This is one of the things that really helps me on the days when I feel consumed by symptoms and, in all honesty, less than attractive. Dressing the part reminds me that I’m a woman, and helps me set aside all of the other things happening in my body.

Setting the Mood

Sometimes setting the scene can create an atmosphere that transports the two of you outside of the mundane parts of life. While it can be fun to have lights on, you may feel more comfortable without direct, harsh lighting. Think about ways to soften the light and set a romantic mood. Candles are always a good option, and the warm flickering light tends to be extremely flattering. You could also string Christmas lights, light a fire, or keep a low-wattage lamp near the bed. If you have medical devices, scarring from procedures, or other things that may be visible reminders of your illness, this can be especially helpful.

Another way to set the mood is with music. Think about songs that enhance your mood without being distracting, whether it’s instrumental, hip hop, folk, pop, or whatever style you both enjoy. We’ve made “getaway” playlists with songs that bring back memories or have special meaning, or with themes we wouldn’t normally listen to when we’re around our kids. Sometimes it’s fun to have specific music to play in the background, and it can help you keep your mind from wandering back to your health (or other countless distractions!).

Overcoming Obstacles

Sometimes there are physical obstacles or difficulties that get in the way of our ability to enjoy intimacy. Again, I highly recommend discussing these things with your medical provider to see if there are any interventions available to alleviate some of these challenges. In addition to medical help, though, it can be helpful to make use of some readily available resources.

If you struggle with pain, weakness, or mobility, the physical dynamics of intimacy can be extremely difficult. One thing that can help is to use pillows, wedges, and other similar props to support your position and reduce your workload. A wedge pillow is a great solution (and also helpful for those long hours resting in bed as you read or watch a device). A simple wedge can help you find a position that’s comfortable and reduces pain. It can support legs, hips, arms, or back to compensate for weakness. And it can offer variety in positions to help with loss of sensation. There are expensive pillows on the market designed specifically for intimacy, but a regular wedge pillow meant for reading can be just as useful. You could also experiment with other pillows, bolsters, and furniture to find positions that minimize pain and effort and help you focus on one another.

If you experience dryness because of autonomic dysfunction or hormonal changes, consider using a personal lubricant. Typically, water-based lubricants are safest. If you have sensitivities or allergies to fragrances, avoid scented products. If you prefer not to use a synthetic lubricant, try using a natural oil such as coconut or almond. Almond oil can be used as lotion or moisturizer on your whole body, incidentally (and it’s great for your legs after you shave).

For pain or reduced sensation, a warming massage oil might be helpful. This pairs well with the pre-intimacy massage, but even if you don’t want to play the role of full-fledged masseuse, rubbing some warming oil on the body (any relevant parts!) can help stimulate circulation and sensation, and increase your enjoyment.

While none of these ideas address the more medical aspects of the challenges associated with chronic illness, hopefully they will help you remove some of the obstacles and clear the way to enjoy intimacy. It can certainly feel like hard work, sometimes–but in my experience, it’s possible and worth every effort to enjoy intimacy, in spite of your physical limitations!