Sometimes Kirsten Schultz doesn't want to hold her husband's hand. Not because he forgot about their dinner reservation or because she's anti-public displays of affection, but because, well, it hurts. "You know when your leg falls asleep and you rub it on a different textured surface, it feels even weirder? It's kind of like that, but all over and painful," explains Schultz, a 29-year-old sex educator, writer and activist in Madison, Wisconsin, of one of her fibromyalgia symptoms.
In addition to fibromyalgia, a chronic condition characterized by widespread muscle pain, Schultz has post-traumatic stress, systemic juvenile arthritis and other conditions that contribute to her chronic pain. Hurting a partner's feelings by turning down a hand-hold, she and others find, is one of the more manageable concerns that come with finding -- and keeping -- romantic relationships when you have chronic pain, or any pain that persists when it should not, whether it stems from a current illness like arthritis or endometriosis, a past treatment like chemotherapy or spine surgery, or a poorly understood condition like chronic fatigue syndrome or interstitial cystitis.
"I get this complaint from a number of my patients: Pain is problematic when it comes to relationships because it's invisible," says John Sturgeon, a pain psychologist at Stanford University Medical Center. As a result, their partners or potential partners may not understand why they may have to turn down a movie date, pass on cocktails or keep things PG in bed.
"There are times you're just not able to do what your healthier peers are doing. Saying, 'I can't go out tonight because I just want to rest -- it's hard for people to understand that if you were fine the day before or even a few hours before," says Ashley Boynes-Shuck, a 33-year-old author, health coach and advocate in Pittsburgh who has osteoarthritis and chronic migraines.
Add that to self-esteem and body image concerns, depression and other issues that often coincide with chronic pain, and it's all enough to make those afflicted conclude that finding or enhancing their love life is not worth the physical and emotional energy.
"The implicit assumption people make sometimes is, 'If my pain gets better, my relationship will get better,'" says Sturgeon, who studies how positive emotions and social relationships can enhance functioning and quality of life among people with chronic pain. But while there are a variety of effective ways to manage chronic pain, until there's a cure, he says, "you may be waiting to improve your relationship for something that's never going to happen."
But far more than being something nice to have (so why delay?), love can be critical -- even near-curative -- for people with chronic pain, finds David Bresler, a neuroscientist, acupuncturist and health psychologist in West Los Angeles, California, who founded and directed the first chronic pain center at UCLA, where he saw people with severe, seemingly untreatable, chronic pain.
"We'd try everything we could think of without much success, and when they would fall in love, guess what would happen? I'm not kidding you: off the medicines," Bresler says. "That's what love can do."
Bresler's experiences aren't just observations; they're science. Brain scans of people in the early stages of passionate love have shown that the emotion works, in many ways, as a potent pain reliever. "People who are in love and people who are taking cocaine or other types of pain relievers -- [their brain scans] look the same," says Terri Orbuch, a psychologist at Oakland University in Michigan and author of "Finding Love Again: 6 Simple Steps to a New and Happy Relationship."
Part of that reaction likely also has to do with the release of feel-good hormones, but even when the honeymoon stage passes, research suggests that love or any strong relationship can dull pain in part because the brain tells the body it's safe from threats. (Social isolation, rejection and loneliness, on the other hand, set off the body's flight-or-fight response and can enhance pain.) Others attribute the pain-relieving effects of love to its ability to keep you mentally, emotionally and physically occupied -- key behavioral strategies of coping with chronic pain. The ability of positive touch to reduce stress and release positive hormones helps, too, Orbuch adds. "If nothing else," Boynes-Shuck finds, "loving others and being loved helps on a mental, emotional and spiritual level when living with illness."
Here's how chronic pain experts and patients suggest overcoming some of the challenges of dating with chronic pain:
1. Know your worth.
It's a cliché, Boynes-Shuck says, but it's true: You can't find love until you love yourself. She learned that the hard way, first dating cheaters and verbal abusers when she viewed herself as "damaged goods." But once she began accepting her illnesses as part of -- but not the only part of -- her, she found the man she went on to marry. "There's no ... sense that he's doing anything other than what he feels is natural because he loves me," she says. "He took the 'in sickness and in health' vow very seriously."
2. Communicate continuously.
Whether it's a sex position or laundry load, speaking up about potential pain flares can be difficult but important. As Schultz's husband tells her, "It's not complaining to share what you're going through with me and to help me understand the burden that you're holding so that we can carry it together." Sturgeon emphasizes that conversations about your pain should be ongoing, since "pain" means different things to different people at different times. "Just understanding that someone has pain does not mean you understand what it's like for them," he says.
3. Be understanding.
As hard as it is to live with chronic pain, dating someone with chronic pain is challenging, too. "It's hard for partners or prospective partners to witness us going through pain and they can't help," says Schultz, who recommends using tried-and-true tools like " the spoon theory" -- a metaphor for chronic pain patients' limited energy reserves -- to help explain what you're going through. "Develop that common language," she says. It's also important to understand that your partner probably doesn't want to only hear about your illness, Boynes-Shucks adds. "It's part of who you are," she says, "but I don't think it's good to identify only as a sick person."
4. Seek connection.
Whether or not you find romantic love right away, what matters most is that you have a strong support system, be that in your friends, online community, support group, health care team or, ideally, a mix of all of the above. The American Chronic Pain Association, Inspire and Schultz's forum, Chronic Sex, are good places to start. Just be sure you also surround yourself with people and activities that aren't chronic pain-related, Bresler recommends. "Whatever you give attention to grows," he says, whether that's your pain, a hobby or a romantic pursuit. "Focus on what [you] can do and play to [your] strengths," he adds. "And have the courage to go out and give it a shot."