7 Tips from a Rheumatology Nurse to Help Maintain Sex and Intimacy When Living with a Chronic Illness

Sex and intimacy challenges are common among people with chronic illness, especially with those that cause pain, such as arthritis. A 2019 study published in the journal Arthritis Care & Research found that sexual health problems are highly prevalent among people with inflammatory arthritis, for both physical and mental reasons. But few people feel comfortable discussing sex and intimacy issues with their health care provider. And even if they do share their sexual struggles, many health care providers don’t necessarily feel equipped to address them.

That was the case for nurse practitioner Iris Zink, MSN, RN. Almost 20 years ago, a patient with axial spondylarthritis (axSpA) told Zink she could no longer open her legs wide enough to have sex with her husband and asked for advice.

“I didn’t know what to say,” Zink tells CreakyJoints. “I didn’t have an answer.”

But she was determined to find one. She began a search for every article that addressed how arthritis may impact sex; she only found 20. When she broadened the search to include other chronic illnesses, she says, the results expanded to 600.

Armed with more information, Zink, who is the past president of the Rheumatology Nurses Society, not only felt she could help her patient, but others as well. She began a lecture series, which eventually morphed into a book called Sex-Interrupted: Igniting Intimacy While Living with Illness or Disability, which she co-wrote with Jenny Palter.

Here, Zink shares her tips for maintaining sex and intimacy in a relationship where one partner — or both partners — has a chronic illness.

Know the Difference Between Sex and Intimacy

Before you and your partner can work through any bedroom-related issues, you both need to understand the difference between sex and intimacy. Though the two words are often used interchangeably, there is a difference.

Sex is, in short, a physical act that Zink says each couple gets to define for themselves. For some couples, that means penetration. For others, particularly those in which one partner has a chronic health issue, sex might mean mutual masturbation or oral activity. Many couples may define sex as achieving orgasm, but Zink advises against that.

“Our bodies morph and change over time,” Zink says, pointing out that vaginal dryness and erectile dysfunction are more likely to occur as people age. Zink also says that health issues and medications may hinder or prevent someone from achieving orgasm. The less emphasis a couple can put on that, the more likely they are to be able to relax and enjoy their definition of sex.

On the other hand, intimacy is an emotional state that, as Zink writes in her book, “brings together the acts of sex (body) and feelings of connectedness and caring (brain).” Intimacy can come from spooning naked or simply holding your partner’s hand.

And, more often than not, intimacy is what leads to sex. According to a 2018 study published in the Journal of Social and Personal Relationships, intimacy often acts as a precursor of sexual desire that, in turn, increases the chances of sexual activity.

There may be times when sex is not possible — say, someone is experiencing a bad arthritis flare and has too much pain or fatigue for a physical sexual act. But you can still aim to maintain intimacy by snuggling with your partner to watch a movie or having them give you a foot rub or gentle massage.

Communicate with Your Partner

Despite the physical symptoms that come with many chronic illnesses, Zink says that is not what holds most couples back sexually. Rather, it’s not being able to talk about how the symptoms affect their sex life.

“Patients can be very creative,” Zink says. “They know how to get around pain using different positions. What they need are the tools to communicate.”

There are a number of reasons people have trouble talking about sex and intimacy. Perhaps one partner grew up in a home where sex was seen as shameful, or someone experienced a sex-related trauma in their past. It’s also possible that one or both partners is worried about hurting their partner’s feelings. But, as a 2019 study published in the Journal of Sex Research found, talking about sex can increase sexual desire and arousal. It may also improve lubrication and erectile function, as well as decrease pain, according to the same study.

So how do you get the conversation started? Zink has a few tips.

1. Never have the conversation in bed 

This goes double if you and your partner just had sex. By bringing up the subject of sex in the place where you most often have sex, you create “this whole feeling of ‘well you don’t think I’m doing it right,’” Zink says.

2. Use “I” statements

When talking about sensitive topics like sex and intimacy, Zink says you don’t want to “indicate the other person is doing something wrong,” because they may become closed off and unwilling to talk. To avoid sounding accusatory, she suggests framing the discussion with “I” statements. For example, instead of saying “you never want to have sex,” consider saying “I feel like we don’t have sex as much and I want to know why.” Reframing language to focus on your feelings helps decrease conflict and drive connection, according to Psychology Today.

3. Come up with a ‘mating call’

It sounds a little animalistic, but Zink says it’s important to find a way to tell your partner that you want to have sex and are interested in intimacy. Otherwise, you allow for misinterpretation, something Zink has experienced firsthand.

“In my relationship with my first husband, he would ask me how I felt, and I would say I felt tired because we had three kids and I was working two jobs,” Zink shares. “He thought that meant I didn’t want to have sex, so he’d leave the bedroom.”

They would go through the same ritual night after night, which made her feel unwanted. After some time, she decided to say something.

“Finally, I was like, ‘Are we gonna have sex or what?!’” she says. This started a conversation, where Zink learned her then-husband was worried about burdening her with sex when she was tired. In turn, he learned that her being tired didn’t necessarily mean that she wasn’t in the mood for sex.

Eventually, “Are we gonna have sex or what?!” became their go-to signal for sex. Keep in mind, your mating call doesn’t have to be this blunt; it just has to convey an interest in sex and intimacy to your partner.

Know — and Reassess — Your Love Language

Developed by Gary Chapman, PhD, the five love languages are five different ways people express and receive love: words of affirmation, quality time, receiving gifts, acts of service, and physical touch.

Because not everyone communicates or receives love in the same way, it is important to be aware of your partner’s love language and adjust your actions accordingly. This can also help you understand why certain issues may be arising in your relationship. For example: when a person’s primary love language is physical touch and they are experiencing sex or intimacy issues.

“If someone’s primary love language is sex and they can’t get an erection, then they just feel like less of a person because they aren’t able to convey that or get what they need,” Zink says.

In this case, it’s important to redefine — not change — the love language in a way that meets the recipient’s need without burdening their partner.

Practice Mindfulness

In her book Zink writes about having a “nothing box,” a default setting in the brain that frees the mind for sex.

“If nothing else is on your mind, then you tend to give your attention fully to what’s happening to your body (and your partner’s body),” she writes. “That’s ideal during lovemaking.”

Unfortunately some people struggle finding the “nothing box,” particularly when they are dealing with a lot of daily stresses.

This is why Zink often encourages patients to practice mindfulness outside of the bedroom so, when the time comes, they are able to clear their mind for sex. This can be intimidating to those who associate mindfulness with hours-long meditation sessions. But it doesn’t have to be as long or as structured as that. According to the Mayo Clinic, practicing mindfulness is merely using meditative techniques, like breathing exercises and guided imagery, to relax the body and mind and help reduce stress. Zink says you can even practice mindfulness while you eat your lunch.

“[When you’re eating], ask yourself ‘how does the food feel in my mouth,’ and ‘what are the different tastes I’m getting,’” Zink says.

Strengthen Your Pelvic Floor

Even when a couple works through any intimacy issues, there still may be physical challenges. For people — men or women — who experience pain during sex, Zink recommends Kegel exercises.

According to the Cleveland Clinic, Kegel exercises are used to strengthen the pelvic floor muscles which, in addition to controlling uterus, bladder, and bowel movements, contract when a person orgasms. When the pelvic floor does not relax and contract as it should, a person may experience muscle spasms and pain, according to the American Journal of Managed Care.

The method for Kegel exercises is similar for women and men. It starts by identifying your pelvic floor muscles. For women, you can do this by stopping your urination mid-stream. For men, you can tighten the muscles that keep you for letting out gas. (But don’t do Kegel exercises while emptying your bladder, as it can increase your risk of a urinary tract infection.) Once you’ve become comfortable identifying the muscles, the rest is simple: Just tighten the muscles and hold for three seconds, then relax for 10 seconds. Zink recommends doing a few sets several times a day.

For people who struggle with these exercises, pelvic floor retraining might be necessary. Zink suggests asking your gynecologist or urologist to recommend a physical therapist who specializes in pelvic floor retraining.

Zink warns that, as part of the training, the physical therapist will most likely have to put their fingers in the vagina. This can be uncomfortable physically and mentally, particularly for people who have been through sexual trauma. For those patients, Zink says there is a lot of pelvic floor strengthening yoga that can be done in addition to Kegel exercises.

Consider a Warm Bath

If you have the time (and a tub), Zink recommends taking an Epsom salt bath prior to sex. Warm water is known to relax muscles, improve joint mobility, and reduce pain. Some studies suggests the chemicals in Epsom salt may, “increase certain cells that mediate inflammation by enhancing circulation and breathing,” Maura Daly Iversen, PT, DPT, SD, MPH, FAPTA, Associate Dean of Clinical Education, Rehabilitation, and New Initiatives at the Bouve College of Health Sciences at Northeastern University in Boston, Massachusetts, previously told CreakyJoints.

But there is a potential downside to the pre-sex soak. Zink says the Epsom salt may take away some of your natural lubricant. To combat this, she recommends utilizing lube during sex.

Plan Things Out But Be Flexible

Scheduling sex may sound like a mood-killer, but it can be beneficial for someone living with a chronic illness. Zink says planning allows patients to take into account when their pain may be less severe and their joints are more mobile. It also gives them time to take medications or do exercises that minimize their pain and relax their body.

But it’s not enough to simply pencil “sex” in your joint calendar. To help get in the mood, Zink recommends couples “send flirty texts throughout the day” to keep the plan (and excitement) in mind.

Still, no amount of scheduling and sexting can prevent the unexpected flares that come with a chronic illness.

“I’ve had so many patients with Crohn’s disease or ulcerative colitis tell me, ‘I was wearing the lingerie, I was up for it, and then I had explosive diarrhea,’” Zink shares.

In those instances, Zink says it’s important to collect yourself and communicate the situation with your partner. Chances are they will be understanding and supportive and open to waiting until you feel better.

When one or both partners has chronic illness, there isn’t one solution for improving intimacy and sex in a relationship. And there are very few simple solutions. But, as Zink says, couples who are “on the journey together” are the ones who will find ways to maintain intimacy and a satisfying sex life while supporting each other.

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