Dit is hoe seks is als je ook een chronische ziekte hebtmei 2, 2020
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When Fabian Bolin, CEO and co-founder of War on Cancer, was diagnosed with leukemia at age 28, he lost 40 pounds and became very weak. At the time, Bolin thought he was being open with his partners about his journey—he even had a blog about his illness that he shared with them. But the one thing he couldn’t get himself to talk about was its effect on his sex life.
“Losing so much strength, body mass, and sexual drive altogether left me feeling pretty useless,” he remembers. “The inevitable trauma and loss of self-worth that comes with cancer changed the way I was able to engage with someone. I never spoke about the lack of sexual drive, which probably made them question my level of sexual attraction. And I never spoke about my low self-esteem or self-confidence. I only communicated that I wasn’t ‘feeling like myself.’”
None of Bolin’s healthcare providers talked about sex with him, except to warn him to use condoms.
Bolin is one of many men with chronic illnesses who are also dealing with sexual issues—and struggling to talk about them. Chronic illnesses can lead to physical side effects like erectile dysfunction, not to mention feelings of sexual inadequacy and isolation.
“I felt really diminished as a man—as a person.”
Jack, a 58-year-old audiobook producer and narrator in New York who suffers from fibromyalgia and osteoarthritis, also struggled with feelings of diminished masculinity when chronic fatigue and pain compromised his sex drive and ability to get hard. He also had trouble finding partners while he was essentially home-bound for three years.
“I felt really diminished as a man—as a person,” he says. “And since sex has always been an important thing to me, inability to attract partners and inability to perform in the ways I had been able to previously made me feel small, isolated, and at times, hopeless.”
Jack also lacked support from doctors for these issues. “Apart from mentioning some mild changes in my sex drive or ability to function at full capacity, there was not much discussion around that,” he says.
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Frank, a 30-year-old in Brooklyn who has experienced erectile dysfunction and difficulty finding pleasure due to Crohn’s disease and rheumatoid arthritis, has experienced the same challenges getting reliable information from medical professionals.
“Doctors don’t have answers for me and just say it ‘comes with the territory,’” he says. “The therapists I’ve had have shied away from really digging into it and have mostly said ‘it’s tough living with a chronic illness.’”
Part of the problem is physicians aren’t always trained to talk about the sexual side effects of chronic illnesses or medications, says Dr. Kristen Mark, sex educator and contributing expert for the app Coral. “So, the support can be quite limited. Additionally, our culture places a lot of expectation on men to function sexually—to always want and be ready physiologically for sex—so it can feel really isolating when chronic illness interferes with this.”
Marks recommends talking to your doctor about any sexual issues your illness is causing you, as they may be able to prescribe medications or other treatments. In addition, sometimes medications contribute to the problem, so they can make adjustments. But since doctors often don’t provide enough support, seeing a sex therapist can be a way to get additional help. And because many men with chronic illnesses need to learn to experience pleasure in new ways, hiring a hands-on professional like a sexological bodyworker may also be helpful, says clinical sexologist Sarah Melancon, Ph.D.
“It was hard because I still wanted to connect with my wife and be part of her pleasure.”
For some men, adjusting to a chronic illness means taking the focus off intercourse, says clinical psychologist Dr. Carla Marie Manly. “Oral sex, sex toys, and other forms of sexual stimulation and intimacy are often possible when sexual intercourse is not,” she says. “Enjoy couple’s massages, cuddling, and bathing time with a partner.”
PJ Sage, a 36-year-old adult industry performer and grad student in Pittsburgh whose sex drive was wiped out by chemo for testicular cancer, says there was a positive side to the need to limit intercourse. “It was hard because I still wanted to connect with my wife and be part of her pleasure, but I felt sick so much of the time,” he says. “We had to think much more consciously about what we were doing and what we wanted. There wasn’t a default anymore.”
It also helps to stop focusing on performance, which can leave many men feeling inadequate and perpetuate sexual issues. “A negative cycle can occur in which a man does not feel confident, he attempts sexual intimacy but is not ‘successful’ due to factors such as exhaustion, stress, medication, etc., and thus feels less inclined (and able) to engage in sexual behavior in the future,” Manly explains.
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Manly suggests focusing instead on being emotionally intimate and connecting with your partner. “When a man is less performance-oriented, a natural rise in libido can occur due to the decreased level of performance-related stress,” she says. A few things you could do to build intimacy include taking a bath or shower together, giving each other massages, and putting essential oils on each other, says Manly. You could do these things as a form of foreplay or on their own.
The good news is, many men with chronic illnesses have found that when they have been open with their partners about their struggles, they’ve been understanding. Jack says his partners were happy doing other things if he couldn’t get hard.
Sage even found ways to get creative and use aspects of his illness to his advantage. “We had all these black nitrile gloves laying around as part of my precautions to avoid getting sick when I went out of the house. At some point, we realized those were really fun to play with,” he says. “When slightly wet, they glided across and inside her body so smoothly.”
“Non-ejaculatory orgasms were probably the biggest turning point.”
After Nick Hamilton, a 37-year-old consultant in Washington, DC, suffered several traumatic brain injuries that led to dystonia and dysautonomia, erectile dysfunction motivated him to dive deeper into tantric practices he’d previously explored.
“Non-ejaculatory orgasms were probably the biggest turning point,” he says. “Teaching a partner how to give me a massive amount of pleasure without touching my cock became sort of the fun of the experience.” Hamilton even learned that he could orgasm just by having his head scratched lightly.
“Be willing to be open-minded and explore, to let go of the idea that pleasure has to come from your cock, and explore how much pleasure you can feel in your body,” he advises other men.
Bolin, who is now in remission from leukemia, met somebody in the final weeks of his treatment. He was able to get into a year-and-a-half relationship and gradually open up to his partner about his illness’s effect on his sex life, but it took a lot of time and trust.
“My advice is to communicate everything you experience and feel very transparently if you are going into a serious relationship with a chronic illness,” Bolin says. “Your partner is only ever going to be able to interpret so much on their own. You have to help them.”