Partners of people with illness and disability often hide loneliness and physical frustration—not to mention, a world of hurt.
by Julie Halpert Health WriterWhen Jane Jones* a 62-year-old computer engineer living south of Tucson, AZ, married her husband, Bill, in 2010, he was generally healthy. “We had a really good sexual relationship, very active,” she shares.
But in 2019, after being diagnosed with bladder cancer, her husband had surgery to remove his prostate, bladder, and lymph nodes. “Right about then, our sex life was over,” Jones says. “His desire is not there.” Jones knows that remedies are available, like having a vacuum pump surgically inserted into her husband’s penis to help him get and maintain an erection, but she says he wasn’t comfortable with this solution, since it wasn’t guaranteed to solve his problem. “Sometimes we get into big fights,” she admits. Uncomfortable with pleasuring herself, Jane is resigned to living without sex.
Jones’ situation isn’t uncommon. Maureen Whelihan, M.D., a gynecologist and founder of the Center for Sexual Health and Education LLC in Palm Beach, FL, says that vulvar, vaginal, breast, and prostate cancers, as well as Crohn’s disease, chronic back pain, Parkinson’s disease, multiple sclerosis (MS), diabetes, and chronic skin conditions including psoriasis (PsO) all “can have an effect on sexual movement, sexual interest, or sexual pain.”
Dr. Whelihan also mentions that medications used to treat various chronic conditions (like high blood pressure) can affect one's ability to have an orgasm, becoming “a deterrent in interest in sex.” With roughly half of adults in the U.S. living with a chronic condition, and half of adults living with a spouse, the situation is widespread. Many suffer in silence, due to their reticence over discussing the topic.
Marriage is hard for everyone, but it can be even harder when one person has a chronic condition. Disease, illness, and disability can make a partner seem like a different person. That’s no one's fault, says Laurel Wittman, board president of the Well Spouse Association (WSA), which provides online resources and a network of peer support groups.
“This is an area that people really struggle with,” she says. While some partners come together to find ways to sustain physical intimacy, for others the situation takes a huge toll on the relationship. A 2020 study found that for couples in which a partner has an illness that lasts longer than six months, the risk of breaking up is 40 % greater than when good health is the status quo. However, illness itself isn’t necessarily to blame for the end of a relationship; it’s often the related stressors, including medical costs and/or the burden of caregiving that can accompany a serious health condition, that provide the proverbial last straw. A waning or nonexistent sex life can feel like just another pile-on.
Intimacy: A Thing of the Past
When Amy Lee,* now 45, first became romantically involved with her now wife in 2001, their relationship was highly physically charged.
“It was just sex nonstop—the best sex in my life,” says Lee, a consultant who lives in the Los Angeles area. “Frequency was great. Intensity was amazing.” But over time, her wife began losing interest in sex altogether—something Lee now associates with the onset of chronic illness. She recalls how in 2016, when their six-year-old-son had just turned one, she pleaded for a “sex weekend” away. “She let me pleasure her and then she fell asleep and didn’t wake up until we checked out,” Lee says. That was the last time they had sex.
Lee now strongly believes her wife’s low libido and exhaustion was caused by a brain disease she was diagnosed with in 2019 after she experienced several strokes. The condition led to her blood vessels shrinking over time, which limited blood flow to her brain. Two surgeries improved symptoms, but Lee’s wife still can’t drive, she sleeps past noon most weekends, and she can’t assist in maintaining the household.
Lee is now a full-time caregiver, not a lover; she’s had to dress both her son and her wife at times. “I’m a pretty sexual person, and to shut down my sexual desires was really hard. I was incredibly unhappy about that,” she says. “This isn’t just the woman I love. She’s also the woman I’m highly sexually attracted to.”
Nancy Smith*, a 58-year-old living outside of Dallas, TX, recalls her early years with her husband, a former NFL football player, now 78, as “exciting.” They married in 1992 and their two daughters were born in 1993 and 1994. They routinely had sex a few times each week. But that changed in 2006 after he had knee surgery and shoulder replacements, the result of a career that taxed his body.
“Positions were difficult,” she says. “The more surgeries he had, the less mobile he was.” Following another surgery for cancer of the salivary gland in 2019, lingering effects of radiation led to the end of sex altogether. It didn’t help that her husband had a volatile temper, making the marriage challenging from the start.
As someone who feels more attractive than ever—and is overwhelmed by full-time caregiving responsibilities—Smith is consumed by anger. Yet her marriage vows, rooted in her religious beliefs, keep her in the relationship, if not happily so. “I feel like I'm in a POW camp," she says. "I know I'm going to get out one day. I just don't know when it's going to be.”
Resentment can be worse in relationships that weren’t as harmonious prior to the onset of the chronic disease, says Lee Phillips, E.D.D., L.C.S.W, a licensed psychotherapist and certified sex therapist with practices in McLean, VA, and New York City. A healthy partner may be bitter because they didn’t expect a spouse to get sick, while the ill spouse can be jealous of a partner’s good health, he says. “Healthy partners often find that the partner’s illness becomes their own. It takes up the entire relationship.”
And yet the decline of an active sex life has a huge impact, he adds. “Sex is one way of feeling comfort, feeling alive, feeling connected to your partner.”
Struggling With Sorrow and Grief
John Jensen*, a 50-year-old living in Southern Connecticut, and his now 51-year-old wife, whom he married in 1999, had a wonderful marriage. “We never had a real fight,” he says. Nearly eight years ago, his wife suffered a severe stroke due to a freak dissection in her carotid artery, triggering a blood clot that went to her brain. It left her with limited movement on her left side and personality changes; these days she prefers to spend her time alone. Suddenly, he had to balance his job as a senior academic administrator at a university with being a primary caregiver to his wife and a single parent to his children, who were five and eight at the time. The combination of the brain injury and antidepressants has all but killed his wife’s libido; the two no longer have sex.
Touch and physical intimacy were the primary ways he felt connected and close to her, making the loss almost feel like a death, he says. "There’s no possibility that I’m going to have a relationship [with her again] where we can have that kind of intimacy.” He’s on medication for hypertension, a condition he developed after his wife’s stroke. “The stress is real,” Jensen says. “It’s having physical effects.” Despite being on two different types of antidepressants, being treated by his own therapist, and seeing a marriage counselor with his wife, he often wonders: “How can I possibly get through even today?”
A November 2021 study found that 40% of caregivers experience depression, mood swings, and resentment. Stephanie Buehler, Psy.D, a licensed psychologist and certified sex therapist in Orange County, CA and author of the textbook, What Every Mental Health Professional Needs to Know About Sex, says that healthy spouses are so consumed with caregiving, they often give up on themselves. Even exercise, which helps Jensen relieve stress, can’t be a priority. “Whatever I do comes at the expense of everything else,” he says.
Buehler explains that the end of a happy sex life due to chronic health problems “creates grief and loss.” She knows firsthand. Her husband had a prostatectomy to remove prostate cancer in February 2021. “He went from somebody who was very interested in sex to someone who lost interest,” she says. The situation is more common than we realize, Buehler believes, since health care providers often don’t ask about sexual issues, and patients are afraid to raise them.
Jim McDonald, a 66-year-old scientist living in rural Western North Carolina, married his wife in 1979. They had a “fabulous” marriage and many happy years of an intimate physical relationship. Then his wife, a former nurse, was diagnosed with MS in 1982. She hasn’t walked in 20 years, and finds it difficult even to sit up. He’s her primary caregiver, assisting in bathing, toileting, and dressing her.
“Given the duties, it is difficult to think of her as a sexual being,” he admits, adding that his wife no longer has the self-esteem to feel physically attractive, either. “Sex took a backseat years ago,” he admits.
Despite the challenges to their sex lives, no one interviewed for this article plans to get a divorce. Jensen says he doesn’t know how his wife would care for herself without him. He values their 25-year history and shared experiences and wants to protect his children from the consequences of a broken relationship.“It’s a combination of love, responsibility, and compassion,” he explains.
Making Peace—or Other Plans
Jones, whose sex life ended after her husband’s many surgeries, was unprepared for this type of life. At her urging, she says her husband agreed to manually stimulate her on occasion. But he typically resists any requests—even the occasional backrub. “Sometimes I wonder if God has played a cruel joke, if it’s all worth it. I just want to walk away,” she adds. She doesn’t confide in friends or family members about her struggles, since they can’t relate and she prefers not to burden them.
Smith says her former pro athlete husband is limited from pain and so many procedures. For a while, he’d try to please her with oral sex. But she missed intercourse and told him so. These days, for her sexual needs, Smith says she “pulls up to the self-serve.” Lee, too, says she has a “collection of toys” that she uses to please herself. “It’s my only sexual outlet,” she adds.
Sex therapist Phillips says that when the healthy partner’s needs can’t be satisfied, “I always recommend that the partner with higher desire masturbate.” Wittman adds that the healthy partner should give themselves permission to do, and should not feel guilty about satisfying their sexual needs, whether it’s via toys, erotica or sexy videos.
Some healthy halves of chronic couples seek sexual satisfaction outside of their marriage or partnership. Jensen says that his wife believes that their "lack of closeness" is her fault. He clarifies that the emotions he feels are mainly due to the situation itself, and are not directed at her personally, but that he can't just turn off his physical needs. With the help of a marriage counselor, they’ve reached an agreement to open up their marriage to others, setting conditions, which include that he can’t see anyone living in their same town. Lee had similar conversations with her spouse last year. “I don’t want to confine myself to no sex for the rest of my life,” she says. She asked for an upfront agreement, since sneaking around is hurtful; she says she loves her wife and doesn’t want to divorce her over lack of sex. Even though Lee’s wife strongly prefers monogamy, she did acknowledge her absent libido and said she didn’t want Lee to be unhappy—ultimately agreeing to the arrangement, provided they adopted a “don’t ask, don’t tell” policy. Though Lee has yet to pursue dating outside of their union, she says it was “a huge burden lifted,” making “it more bearable for me as a caregiver.”
WSA’s Wittman says many healthy partners have gone years—and some, even decades—without sexual contact. They give everything to their partners and get very little in return. Seeking out other relationships can be a valid way to satisfy sexual needs while continuing to provide care for a partner, she says.
Cathie and Israel Helfand of Abbot, VT, are a married team of professionals who’ve worked with more than a thousand couples living with chronic illness. She’s a Vermont-registered psychotherapist with a focus on marriage and family counseling. He’s a licensed marriage and family therapist, as well as a certified sex therapist. “We try to have an open mind,” Israel says of extramarital relations, even talking to patients about considering a professional surrogate to avoid the emotional attachment of an affair, which can be painful for everyone involved.
Cathie says that many healthy spouses fear that their life is over when their spouse is diagnosed with a chronic condition. But it doesn’t have to be that way. “If they figure out what they want and ask for what they want, they actually can have a good life,” she believes.
When to Call in the Pros
Experts say there’s always hope for better intimacy, even when the chronically ill spouse has significant disabilities. The first step is talking about your sex life and communicating openly with your partner. Then have a similar discussion with your primary care physician.
Paul Tatum, M.D., an associate professor in the department of internal medicine at Dell Medical School at the University of Texas, Austin, says that when patients or their healthy spouse raise the issue, doctors can explore whether there is something that can be done to address physical problems, like adjusting medications. “Sometimes we can't fix the situation, but we can help make space to have conversation about it,” he says.
Dr. Whelihan makes a point of asking her patients if an ill partner is getting enough sleep, since that can lead to a whole host of problems, including hormonal disruption, which can affect energy levels and sex drive. She says physicians can propose different types of devices or procedures to help address at least some sexual issues, including a penile implant for erectile dysfunction, a common complication from diabetes. “We can almost always improve the situation,” she says.
Buehler adds that in order to maintain some level of intimacy, “there really needs to be acknowledgement that things may have changed in a permanent way, that they’re not going to be going back to the way they once were.” That can be difficult to accept, she says.
Seeing a therapist, either individually or as a couple, can be helpful, Buehler advises. And peer support—where the healthy partner can connect with others in their situation—also is key. Associations including The National Multiple Sclerosis Society, The Parkinson’s Foundation, Crohn’s and Colitis Foundation, American Heart Association, and Family Caregiver Alliance offer support groups and resources on how to grapple with intimacy issues and other challenges.
Cathie Helfand says professional therapists can help couples take the first step in discussing a difficult subject in a safe space, before brainstorming and negotiating a plan. Couples need to expand their idea of what constitutes sex, she adds, shifting from the goal of erection and orgasm to the process of connecting and intimacy through other types of activities involving touch and sensation.
Israel Helfand advocates for “skin on skin time.” He recalls one client, a quadriplegic, with a foot fetish. Her partner would play with her feet and suck on her toes and she felt pleasurable sensations from that.
Frederick W. Foley, Ph.D., a professor of psychology at Yeshiva University in NYC who specializes in assessment and treatment of MS, suggests trying a body mapping exercise, where a couple removes all their clothing in a comfortable, private environment and takes turns touching each other from head to toe.
“Many people are surprised that they can experience sexual feelings even when they don’t have desire,” he explains. He acknowledges that the sex will never feel quite as intense, but it can at least be “pleasant and enjoyable.” Dr. Buehler adds that massages or washing the partner’s hair in a way that’s more nurturing and loving “rather than just functional” can help preserve the physical relationship. Israel says that even laughing out loud “produces almost as many endorphins and positive hormones as an orgasm.” Fantasy and role-playing can add a spark to a relationship, too, he says.
Bottom line? Buehler says it’s important for healthy partners to never give up on finding some kind of healthy sexual release. “Understand that there may be moments of frustration or disappointment or confusion. Talk about that. Then try something else.”
To protect privacy, we’ve changed all names in this story at our subjects’ request.
Chronic Disease in the U.S.: Centers for Disease Control and Prevention. (2020.) “Prevalence of Multiple Chronic Conditions Among U.S. Adults, 2018.” https://www.cdc.gov/pcd/issues/2020/20_0130.html
Marriage in the U.S.: U.S. Census Bureau. (2021.) “America’s Families and Living Arrangements: 2021.” https://www.census.gov/data/tables/2021/demo/families/cps-2021.html
Relationship Dissolution After Diagnosis of Illness: Semantic Scholar. (2020.) “Chronic Conditions, couple-factors and union dissolution.” https://www.semanticscholar.org/paper/Chronic-conditions%2C-couple-level-factors-and-union-Lam-Vidal/7f8ae2c307c17cfdcdfbfbc55469b267bf447524
Stress of Caregiving: Genworth. (2021.) “How Caregiving Impacts, Families, Communities and Society.” https://pro.genworth.com/riiproweb/productinfo/pdf/682801BRO.pdf
Meet Our WriterJulie HalpertJulie Halpert is a freelance journalist with more than two decades of experience writing for many national publications, including The New York Times, CNBC and The Wall Street Journal. She tackles numerous topics in her pieces, ranging from retirement and personal finance to education, health, the environment and parenting. You can follow her on Twitter: @julhalps
