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Intimacy and Pain
The Art of Staying Connected
By Amanda Crowe, MA, MPH
Reprinted with Permission from the American Pain Foundation
Sarah Spolum, 25, and Rhett Weyenberg, 32, met four years ago in a ceramics class at the University of Wisconsin at Madison. He was a fine arts major, and she was looking for a creative outlet to her speech pathology coursework. Upon graduation they opened a small ceramics studio together. In love and building a life together, the couple is now facing the tragic realities of home hospice care.
Rhett was diagnosed with melanoma in 2000. His treatment was initially successful. But, in 2007 it returned — although this time the cancer had spread to his chest cavity and lymph nodes. Despite several rounds of increasingly aggressive therapies, the cancer continued to grow. The tumors, now pushing into his lung and other vital organs, had resulted in constant aching and jabbing pain. In addition to trying to come to terms with his prognosis, the ability to maintain physical intimacy has become more difficult.
“Rhett’s pain reached a levelthat I had to start sleeping in a separate bed to avoid hurting him. When he transitioned to hospice, they brought in a twin size hospital bed and placed it on the first floor near a restroom to better meet his
physical needs, but that tradeoff meant that we are no longer in the bedroom upstairs where we could be together and have a bit more privacy,” said Sarah. “At this point it
would be difficult not to hurthim in most positions. We’ve had to find other ways to express our love, and it’s brought a new level of intimacy to our relationship.” Unfortunately they’re not alone. Most people with pain
find it difficult to maintain sexual intimacy with their partners. In fact, surveys of couples living with chronic pain find as many as three out of four have little or no sexual contact.
“Patients often feel overwhelmed with pain, and
may not have the energy or interest to think about [sexual] intimacy or make it a priority,” said Julie K. Silver, MD, assistant professor at Harvard Medical School, Department of Physical Medicine and Rehabilitation.
A Cat and Mouse Game
People with pain often feel vulnerable, self-conscious and may resist being physically intimate with their partner for fear that it will worsen their pain. Their partners similarly worry that they may inflict more pain. What typically
ensues is a game of cat and mouse where the person living with pain may have to ask to be touched, but the spouse is afraid that any sexual activity may cause additional physical distress. For some, even loving gestures such as holding hands or cuddling can send shockwaves through their body. At the same time, bothpartners are afraid of rejection.
“These issues often place added strain on the relationship,” said Dr. Silver. “But, there are ways to address sex and pain, including positioning or timing of medications.”
And, for many patients, sex can be a great antidote for pain. That’s because the bodyreleases endorphins, natural pain and stress relievers, during orgasm. And the closeness you feel with your partner can help deepen your relationship and bolster your coping skills. But, it remains a challenge for many couples.
Communicating with Your Partner
Whether due to the pain itself, associated depression and fatigue, or side effects from medications, pain interferes with sexual activity and can have a profound impact on a relationship. The effect on the relationship is usually directly proportional to the frequency and intensity of the pain, as well as the extent of the person’s disability, according to Dr. Silver.
Patients may refrain from physical contact due to:
• Pain itself
• Other co-morbidities or consequences of unrelieved pain (for example, fatigue, anxiety or depression)
• Reduced sex drive/functioning or other side effects (e.g., constipation and associated pelvic discomfort) of certain pain medicines or combination of medicines
• Fear or anticipation of pain with sexual contact
• Lack of self-esteem and body image issues (for example, someone with arthritis may grow to feel unattractive as their joints become more out of line)
• Feelings of shame, guilt or resentment due to reduced sex drive or history of avoiding sexual activity |
As time goes by, it becomes harder to undo learned patterns of resisting sexual activity with your partner. But couples need to work together to try to prevent this cycle of escalating fear and distancing early on so that it doesn’t lead to complete avoidance of affection.
“It’s an awkward subject and, in some ways, you may feel the need to talk about your sexual intimacy at all means you’ve failed,” said Shirley Otis-Green, MSW, LCSW, ACSW, OSW-C, Senior Research Specialist at theCity of Hope National Medical Center in Duarte, CA. “We have difficulty with the language of pain and the language of sexuality, so it presents an extra challenge both in yourrelationship and when talking to healthcare providers.”
Additional Resources
Patricia Fennell, MSW, LCSW-R,-She has written on the subject of Sex and Intimacy for individuals with Neuroendocrineimmune Disorders.
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“It’s an awkward subject and, in some ways, you may feel the need to talk about your sexual intimacy at all means you’ve failed,” said Shirley Otis-Green, MSW, LCSW, ACSW, OSW-C, Senior Research Specialist at the City of Hope National Medical Center in Duarte, CA. “We have difficulty with the language of pain and the language of sexuality, so it presents an extra challenge both in yourrelationship and when talking to healthcare providers.”
Still, the most important step in reconnecting is to start a dialogue with your partner—one that is free of blame and is focused on ways to be more intimate and reinforce your commitment to one another.
And this isn’t a one-time conversation, says Dr. Silver,
who encourages couples to set mutual goals, check in with one another and think of creative ways to show affection. She suggests reading a book to one another, giving one another a massage, leaving love notes in unexpected places and reminding each other about your initial and ongoing attraction. Sarah is also a big proponent of setting small goals together and talking through what’s important to each partner. It can
be trying, so she advises taking time to breathe and center yourself.
Spontaneity Nearly Impossible, Make a Date
Another burden for couples dealing with pain issues is the idea that sex is supposed to be spontaneous, not premeditated. But this ideal of being passionately swept away in the heat of the moment is in complete disconnect with the realities of the pain patient, according to Otis-Green.
“Those who suffer with pain are often too exhausted and/or the pain may not be well controlled, so sex is pushed to a lower priority even though intimacy with their partner is hugely important,” said Otis-Green, who works with cancer patients and their families.
And if the pain has worsened during sex before or if it’s directly related to sexual contact, for example for women with vulvodynia (chronic pain or discomfort of the vulva), the person is already primed to anticipate pain. “We are onetrial learners. We don’t want to do something more than once if we anticipate a painful outcome,” she said. “But it’s important to try to find ways tomake sexual contact enjoyable.” It may seem impersonal, but experts suggest scheduling time to be physically intimate with your partner. Pick a time of day when you tend to have the mostenergy and are least likely to have a pain flare. “Sometimes it’s the best way to do it, to look forward to being with your partner,” said Dr. Silver.
Otis-Green agrees, and reminds patients to find ways to allow themselves to relax and feel vulnerable with their partner. She also says another necessary step is to reframe the experience. For example, she explains that if someone has a headache, instead of saying “Not tonight dear, I have a headache,” shift the approach to, “Even though I have a headache, what can we do together to feel connected and valued?”
“Perhaps you don’t have the physical stamina, but thatdoesn’t mean there aren’t other ways to express your affection and intimacy,” says Otis-Green. “Intimacy, love and connectedness are not always about sex. It can be something as simple as changing a bandage and, when doing so, giving a kiss that lingers, or giving your partner a bath or a scented-oil massage.”
Beyond Sexual Intimacy
Emotional and physical intimacy not only fulfills our need for human connection, it’s also an important part of our identity. “Sexuality is a valued and cherished part of a commitment between two people, and it goes beyond sexual intercourse,” says Dr. Silver.
The most important thing is to let your partner know you value your connection.
Sarah couldn’t agree more. “Before all of this started, the common perception had been that intimacy and sex are synonymous, but it’s not so,” she said. “The most hurtful thing so far is no longer being able to sleep in the same bed together. I miss that physical closeness. It’s not about sex, it’s about the little things you do together and for one another.”
Looking back, she says intimacy was making art together. Now it’s the intimacy she gives and receives in caring for him, cuddling and helping him bathe. And, as time goes by, intimacy will be in their final touches and in letting him know that she’ll be okay.
Other Ways to Help Restore Intimacy
In addition to scheduling time together, there are some other important steps to help restore physical intimacy. These may include:
• Advocating for optimal pain relief
• Making a separate appointment with your
healthcare provider to share your concerns,
many medications can reduce your ability to
get or stay aroused
• Keeping a pain and symptom diary to track
what times of the day your pain tends to spike or
worsen (Download APF’s TARGET Chronic Pain
Notebook at www.painfoundation.org )
• Trying relaxation and energy conservation
strategies
• Talking with and listening to your partner to
express your needs and voice concerns; telling
him or her what feels pleasurable and what hurts
• Thinking of and incorporating other alternatives
whether it’s through touch (cuddling, holding
hands, massaging and kissing), self-stimulation
(for added excitement or to simply watch if
you can’t be active), oral sex, trying different,
more comfortable sexual positions or sharing
sexual fantasies
• Consider asking for a referral to a qualified
couples’ counselor or sex therapist
Additional Resources
Dr. Lina Garcia essay on CFS.
Dr. Mark Pellegrino - Up Close and Personal, he has a chapter in this book dedicated to sex and intimacy. You can purchase it through our Book Book Store by clicking in the shopping cart Icon.
Karen D. Sacks, M.S., L.C.P.C., L.M.H.C. ,
s one of our board members and serves in our Public Policy Committee. Karen is a nationally certified, licensed counselor, communications and life coach in practice for over 28 years. Her personal insight comes from the fact that she has fibromyalgia and suffers from migraine headaches. She knows first hand the myriad of feelings and challenges that come with pain, both emotionally and physically.Karen is the creator of the "Tools for Life", a practical approach to take back control of your life.
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