You are here

How Chronic Illness Can Affect Sexual Function

How Chronic Illness Can Affect Sexual Function

By Steph Auteri | From the March 2014 Issue

As sexologists, we see many different types of clients who struggle with many different types of challenges to their sex life. Many of these challenges arise naturally over the course of a lifetime, in the context of a relatively healthy life.

Still, there are those we sometimes see who face even greater issues. Those for whom the status of their sex life at any given time might not be priority number one. These are the clients who have been diagnosed with, or who are living with, some sort of chronic illness. 

And while issues of sexual function — foreplay, intercourse, and intimacy in general — may not be a priority during the time of diagnosis, or even during one's initial management of this health issue, there's a good chance it will eventually become one.

Several years ago, I had the pleasure of working with Patty Brisben (CEO and founder of Pure Romance) and Dr. Keri Peterson on Sexy Ever After, a book about intimacy post-cancer. During the course of this project, I learned more than I had ever known before about the various ways in which a chronic illness such as cancer can affect one's intimate life. 

For one thing, I learned that many sexual issues that occur during this time of illness tend to be a result of the treatment itself. On top of this, many people also have a reactive loss of interest in sex... which is unsurprising given the trauma of a cancer diagnosis (or the diagnosis of any chronic illness), and the depression and anxiety that can result.

What issues typically manifest during diagnosis and treatment?

Fatigue can become an issue. The diagnosis itself can lead to both physical and emotional distress which, in turn, can lead to exhaustion. And treatments such as radiation therapy, chemotherapy, immunotherapy, and a cocktail of medications can also lead to low energy. Beyond this, chronic pain, nausea, vomiting, appetite loss, and dehydration can leave you weak. And when you're feeling done in by all of these illness- and treatment-related symptoms, you generally don't want or have the energy for sex.

Shortness of breath can become an issue, especially in the case of lung cancer. Various cancer treatments can cause urinary incontinence. And then there's low libido. Low self-esteem and/or body image. Issues with arousal and orgasm. Hot flashes. Vaginal tightness or dryness. Dry orgasms or retrograde ejaculation. Erectile dysfunction. Premature ejaculation. 

In addition to this quick list, there are many other issues, caused by many different types of cancers, and/or many different types of treatments.

And cancer is just one chronic illness. There are many other illnesses that come with their own sexual complications.

In the case of Parkinson's Disease, for example, movement can become rigid, making it difficult to enjoy the same types of positions you once enjoyed with your partner(s). Affect and facial expressions also change, which can be present new challenges for the romantic partner. 

In the cases of diabetes, rheumatoid arthritis, and lupus, medications are often prescribed that directly impact sexual function. As a result, patients can experience erectile dysfunction, decrease in orgasmic intensity, vaginal dryness, or even ulcers. 

If someone has irritable bowel syndrome or Crohn's disease, they can experience flare-ups that result in embarrassing moments in the bedroom. After awhile, they may develop severe anxiety around this. They may avoid sex, asking themselves: what if I become incontinent while having sex? What if I start cramping?

Dr. Anne Katz, a nurse and sexuality counselor, stresses that it's not even always as simple as drawing a straight line between treatment/illness and symptom. "Illness and treatment issues are overlaid on top of additional context," Katz says, "which is always there."

Dr. Sage Bolte, a sexuality and oncology counselor, also points out that, "All chronic illnesses have this shared theme of grief and loss. And then, you're tasked with establishing a new normal. What this means may change on a daily basis."

Much of this is ignored when a patient is first diagnosed, partially because it doesn't seem so important at the time, and partially because most medical providers don't even think to bring it up. Katz, who regularly gives lectures to oncology care providers, says, "Medical school and nursing school curricula are woefully inadequate when it comes to teaching about healthy sexuality. We need to ask our patients about their sexuality. Otherwise, they think either that it's not important or that it's taboo."

Bolte agrees that medical professionals should, at the very least, be asking their patients about this aspect of their lives. "I think they're equipped to bring up and normalize the fact that many patients diagnosed with these diseases experience changes in their sexual self," she says. "I really believe it's their responsibility to at least initiate and normalize these issues. Giving them the permission to be sexual beings is the greatest gift we can give them."

"Patients want permission to talk about it," adds Katz. In fact, In a 2011 study on sexuality in cancer patients, published in the American Journal of Hospice and Palliative Care, 86 percent of participants considered sexuality important enough that they wanted to talk about it with a knowledgeable clinician.

Both Katz and Bolte mention the doubt and insecurity patients can feel around bringing up the topic themselves.

"For practitioners, one of the greatest gifts they are going to give their patients is initiating that conversation," says Bolte. At the very least, she says, they should be asking their patients if they've noticed any changes in sexual function since their diagnosis. "Once that conversation happens," she says, "the sense of relief you see on their faces... they didn't realize it was normal. They thought they would just have to deal with it. They thought it would always be painful, that they'd never want to have sex again. Having that conversation opens the floodgates of conversation no one else has been willing to have with them. It gives them permission to be sexual beings."

When I was working with Brisben and Peterson, the research was endlessly fascinating, but the best part was talking with cancer survivors... hearing their stories of resilience and determination... hearing how they eventually came to a place in their lives where they were ready to reclaim some of the things they had lost.

"I tend to see people in the post-treatment phase, when they want to be normal again," says Katz. "They want to reconnect with their partner again... be as they were."

Of course, there are as many ways to manage sexual side effects as there are... sexual side effects.

For one thing, Katz recommends working with a client's primary care provider. It's important to ferret out how various sexual issues may have been caused by the varying aspects of the treatment itself. She often asks her clients, "Why do you think this is happening? Do you think it might be the medication?"

"I start to explore with them how they might go back to their health care providers and look at the medications they're taking," says Bolte. "Can dosages be altered? Can something be taken in conjunction with this to help with sexual side effects?"

Beyond this initial process of seeking out cause and effect, however, there are an infinite number of ways in which clients can get proactive in the bedroom, eventually finding their way back to enjoyable sex.

Coming back to the example of Parkinson's Disease, Bolte suggests helping patients identify how they can recreate their new normal with the new set of limitations they're suddenly facing. As previously mentioned, movement becomes rigid when living with this particular illness, yet patients can still dance. So while they may not be able to enjoy the sex positions they once enjoyed, something like dance can allow them to connect with their partner in a different way. 

In the case of Parkinson's Disease or any other neurological disorder that limits movement, helpful suggestions may even include something as simple as switching to satin sheets, which are more slippery.

And then there are the changes in affect and facial expressions. In cases like these, finding other ways to receive affirmation can be necessary. Verbal conversation becomes more important than the body cues partners once used, making it necessary for them to learn to communicate in a whole new way. Bolte mentions the types of questions one partner might ask the other if their partner's eyes no longer light up in the same way, or their smile is not the same. Questions like: Are you interested? Do you find me pretty? 

Then there are the things medical providers and sexologists don't necessarily always think about, like dry mouth. "As providers," says Bolte, "we may not be as sensitive to that." Still, things like dry mouth can impact foreplay. In which case a specific gum meant for dry mouth may prove helpful.

In some cases, a pillow placed beneath the hips may help ease the pain some feel during specific sexual positions. In other cases, a warm shower may ease stiffness before an attempt at intercourse. In the case of ostomies, patients may want to think about emptying the bag before sex, or avoiding smelly foods before sex. Sometimes, solutions emerge when we simply delve into the fears clients have in regard to the symptoms they're experiencing, and the ways in which these symptoms might affect the sexual experience.

Unfortunately, it would be nearly impossible to contain all the various pieces of advice for managing changes in sexual function in one, single article... or even in a book. What it really comes down to is getting creative about what you're experiencing, and the ways in which such an experience can be altered.

"What cancer does is take away spontaneity and ease and confidence and the ability to do something in a very routine fashion," says Katz. "You have to engage cognitively. Look at things differently. Communicate around what's working, what's not, what feels good, what doesn't feel good. This is where couples often stumble, because they have to find a new way of doing things. Figuring out the morass of what works and doesn't work is challenging. That's a really big issue."

Bolte expands upon this, saying repeatedly that couples have to look for ways in which to establish a new normal. "I help my clients come up with creative ways to compensate and/or overcome some of the issues they face related to their disease," she says. "Maybe it's as simple as placing a pillow under their hips. Emptying the  colostomy bag before sex. Using lavender or peppermint oil in the bag or near the skin or under the nose. I just get them thinking creatively... thinking outside the box in terms of what was and what did work to what might work now."

In many cases, it's as simple as asking partners to communicate with each other about what each side is experiencing as a result of an illness's impact on their sexual lives. Says Katz: "There are people, often women, who don't have a choice or perceive they don't have a choice to say no [to sex]. They may have a sexually demanding partner and, even in the midst of feeling awful, feel they need to be available in some way, shape, or form."

Having an open and honest conversation with your partner about your feelings, your experiences, your expectations, and even possible solutions can remove a lot of the tension that starts to exist when the partner/partner relationship shifts to that of patient and caregiver.

In the end, the most important step you can take on behalf of your client is acknowledging that sexual side effects do exist, and acknowledging the validity of the loss they may be feeling. You should ask questions. You should be curious. You should reserve judgment of the things you hear, giving your client permission to grieve, and then giving them creative solutions regardless of which illness they have.

You should also collaborate with your clients' doctors. Sometimes, clients try products that may interfere with their treatment in a way they weren't aware of. For example, penis pumps can be dangerous if your client is on blood thinners, or when their platelets are low. If both you and your client maintain an open dialogue with their medical care provider, missteps like these can be avoided.

No matter what direction you and your clients take, however, it can be immeasurably rewarding if a client is willing to think innovatively... to rethink what pleasure might mean for them.

"It's such an honor and a pleasure to work with some of these couples," says Katz. "They've been through hell and back. To see them full of hope and striving for normality is really fantastic."

(image via Rachel Groves)

In the end, the most important step you can take on behalf of your client is acknowledging that sexual side effects do exist, and acknowledging the validity of the loss they may be feeling.