‘Discuss your wishes and limits together’
During or after an illness, sex is often no longer self-evident because there are physical and mental obstacles. Sometimes it makes less sense, sometimes more. General practitioner and sexologist Peter Leusink explains how you deal with this as a couple.
As a general practitioner, he sees chronically ill people every day at his office hours. Patients who, as a result of their condition, often have to organize their lives differently. For example, when it comes to work or social contacts. “We think that’s quite normal,” says Peter Leusink. “It’s part and parcel of learning how to deal with a chronic illness. But it’s different when it comes to sex. Then people suddenly have the idea that it should be exactly the way it used to be, before the disease.”
Leusink has been asking for more attention for sexual complaints in chronic conditions for more than 25 years. Because for physical and mental reasons, sex is often not obvious when you are (or have been) ill. “It’s not going as it used to be, so it’s going to stop, many people think,” explains Leusink. “But there can often be more than patients think.” According to him, you have to ‘reinvent’ sex for that. For example, by preparing it well and by making clear agreements about it. “Discuss your wishes and limits together. What is still possible and what is not? What would you like more often, what less? How can you shape that together?”
But sex should be spontaneous, right?
“That is a persistent misunderstanding. Even if it doesn’t work out on its own or if a patient suddenly feels much more interested, you can enjoy sex. ‘If we have to plan everything in advance, the fun is gone’, I often hear. But I prefer to turn it around: what conditions are needed to be able to have fun together again? Maybe it means agreeing a set time for sex or taking a bath first to relax.”
Are sexual complaints common during illness?
“A lot. It is estimated that 30 to 60 percent of people with a chronic condition, such as diabetes, multiple sclerosis or dementia, experience sexual problems. Treatments can also cause problems. Well-known examples are antidepressants and anti-hormonal treatments for breast and prostate cancer.”
What are the complaints?
“We distinguish between direct and indirect consequences of disease or treatment. Immediate consequences are usually physical changes. For example, a man can no longer get an erection or a woman cannot get properly moist, so that intercourse is no longer possible. It may also be the case that stimuli work less well physically. Then you are hardly or not at all excited. Or someone becomes sexually disinhibited. The indirect effects can be both physical and mental. COPD may make you very stuffy during sex. Or you can no longer use one side of your body due to a brain haemorrhage. Furthermore, many patients – and their partners – struggle with mental obstacles. Think of insecurity, fear, depression and guilt. And then there are the social and relational aspects. Because what if an illness has made you more of a caregiver or patient than a partner? Or if your demented husband or wife wants to have sex with you all day?”
What about that sexual disinhibition?
“You hear relatively little about that, presumably because it’s an uncomfortable subject for most people. Patients who are disinhibited are always looking for sexual stimuli. For example in the form of porn. Either they become pawing or do a lot of self-gratification. That can be intense, for patients themselves, but certainly also for relatives and carers.”
In which diseases can this occur?
“For example, in certain forms of acquired brain injury. Think of a brain haemorrhage or dementia. Or with some psychiatric conditions, such as schizophrenia or bipolar disorder.”
How does that work?
“Sexual arousal originates in the brain. Under the influence of stimuli, for example touch or images, the nerves to your genitals are activated and you get excited. But there’s something else involved. Your brain also has the ability to dampen those stimuli. After all, socially it is not useful if you get excited all the time and react impulsively to it. As a result of certain brain diseases and some medicines, for example against Parkinson’s, this natural brake no longer works well. And so patients are unable to control their arousal sufficiently.”
Is there anything that can be done about that?
“What doesn’t help in any case is trying to suppress the impulse or punish a patient. It is much better to avoid possible triggers and to look for positive distractions, for example by going for a walk together or doing something else. If that is not sufficient, a doctor can prescribe medication. Think of antidepressants, which have the possible side effect of reducing sex drive. Or anti-hormonal drugs, which work on the stimuli. In any case, it is a complicated and sometimes painful problem, with a lot of shame surrounding it. It is all the more important to talk about it, as a patient and as a loved one.”
Is there sufficient attention in health care for sexual complaints in the event of illness?
“When I started this work 25 years ago, I really had to take the plunge to make it a topic for discussion with healthcare providers. They experience just as much shame about it. Not only doctors, but also psychologists and social workers. We have come a long way in that regard. Much more attention is now being paid to this in healthcare education. Since 2013, in addition to sexologists, there have also been special ‘sexual health consultants’: healthcare professionals such as psychologists, nurses, (pelvic) physiotherapists or educationalists, who provide information and guidance to patients and colleagues. Furthermore, patients have become much more vocal. Not least thanks to the internet. Fortunately, you can find a lot of good information there and also a sexologist or sexual health consultant in your area. All this has lowered the threshold considerably.”
Why has this subject been close to your heart for so long?
“Because there is so much – unnecessary – sexual suffering in chronic patients. I saw that as a starting GP and later also in the rehabilitation center. I wanted to do something about that. It’s enough if you have a chronic illness. Why should you also miss the pleasure of sex?”
Finally: are you comfortable talking about sex yourself?
“Professionally, of course, but personally I sometimes find it complicated. For example, when I started giving my children sex education. Despite all my knowledge and experience, that was also uncomfortable for me. It feels very different when it comes so close.”
Peter Leusink (62) is a general practitioner, sexual health doctor at De Sexuele Zaak and chairman of the Sexual Health Expert Group of the Dutch College of General Practitioners. In 2018, he obtained his doctorate for a study into diagnosing vulva pain in women. He worked for nineteen years as a sexologist at the Groene Hart Hospital. Since 2012, he has been a senior lecturer at the Sexual Health Consultant course.
This article previously appeared in Plus Magazine October 2021. Want to subscribe to the magazine? You can do that in an instant!
Sources):
- Plus Magazine
