Chronically ill and (no) sex

Jochem. Photo: Johannes Odé

Sex is important to me, as it is to most people. But since I became chronically ill, sex is no longer self-evident. How do I solve that? With the necessary kinds of tricks…

Too tired

For the first few months, the exhaustion I felt was still new. I was working so hard to keep myself afloat and to manage my daily life that sex was completely lost.

I barely had the energy to do my job. On my gums, I kept my household a sort of running. There was no energy left for all the "extras" of life (hobbies, friends, sex). So it was absent out of necessity.

At the time, I didn't take it too seriously. I was still optimistic and assumed that all of this would be temporary.

Boring sex

After a few months I picked up the sexual thread the best I could. Even if you are exhausted, at some point you feel like it again. At least, I do.

“I can only have sex on quiet days when I don't have to do anything else.”

Of course it doesn't get really creative under these circumstances, because the energy for that is lacking. But I still assumed the situation would be temporary. So I trusted that that lack of imagination also would be temporary.

Handiwork

So I prepared myself for somewhat boring sex. It was pretty… boring, until something unexpected happened. My arm muscles thought it was enough and went on strike. They were overloaded and painful, and I could barely lift my arms. Few things are more frustrating than being way ahead and unable to continue!

This problem is easy to solve, of course. All kinds of toys and aids are available that can take care of the movement. Admittedly, the better toys that really help you are quite expensive. In view of my Social Benefit allowance, I therefore have to save money for a considerable time. (That also means I have to consider whether to buy a toy, or medicine, or something else necessary. An impossible choice!)

Flare up

My experiment with a toy was successful, but turned out to have unexpected consequences. Sex is a strenuous activity and that means I get a flare up afterwards. This is called post-exertional malaise, or PEM for short. In short, I have to plan my sex carefully. I can only have sex on quiet days when I don't have to do anything else. Then I can use the rest of the day to recover.

“For years I've had carefully-planned-and-pretty-unimaginative-sex-with-tools. How I wish I could have normal sex once again!”

Lucky or unlucky?

In many people with ME/CFS, their libido is largely or even completely gone. So many peers no longer feel any need for sex. Honestly, I don't know if I'm better off, or worse. On the one hand I am happy my libido is still functioning. On the other hand, this leaves me with unsolvable dilemma. So, sometimes I'm jealous of those without libido...

Wish

I have been ill for over 6 years now. So my situation turns out to be much less temporary than I thought at the beginning. Very slowly the memory of good sex has faded. I know sex used to be different, but I can't quite remember it anymore. That is a strange sensation.

So all these years I've had carefully-planned-and-pretty-unimaginative-sex-with-tools. How I wish I could have normal sex once again! Even though I can't quite imagine anymore how that felt exactly. But as long as I'm chronically ill, I will have to dream of spontaneous, imaginative sex without aids.

No attention

In recent years I have seen around 20 doctors and other practitioners. Exactly once I was asked about my sex life, in a questionnaire with more questions about the quality of my life. I complimented the practitioner in question with this question. Out of principle. But also because I secretly think it's quite an "issue" that my sex life has become this limited.

“A good sex life is important for our well-being.”

By the way, my sex life has never been discussed during that treatment. Apparently that question was only a formality. And my compliment unfortunately didn't ring a bell either.

Sex & well-being

Why am I telling all this? Because a good sex life is important for our well-being. (Except if you're asexual.) The World Health Organisation calls sexuality "a central aspect of human existence." And Rutgers, the Dutch knowledge center for sexuality, quotes: "[…] that sexual behaviour and (especially) sexual experience, such as sexual satisfaction, are associated with many things that influence the general well-being of people, such as […] physical and psychological health (Whipple, 2007 )".

I've been missing that "central aspect" of my "general well-being" for years now! And that hurts.

Recognition

When I first wrote about this six months ago, I received an overwhelming amount of responses. Many peers recognise this struggle. The taboo on sexuality is great and I received many compliments that I dared to bring this up.

“In recent years I have seen around 20 doctors and other practitioners. Exactly once I was asked about my sex life.”

It was striking that some peers had fewer symptoms because of sex. Others are unvoluntary single, but wonder how to get a partner if you're too ill to date. That is a question that I ask myself as well, because I would like to have a partner again.

Sexual support

Are you looking for sexual support or tips for other forms of sexual experience? Then you may find inspiration on the websites below (all Dutch):

 

This column was published on WijRollen.nl on the 30th of March 2022.

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