I wrote a blog entry a while ago about sex working, called ‘Safety and Exploitation in the Oldest Profession’. It’s a subject I seem to have different views about from my other liberal friends; perhaps because with trafficking and slavery being so rife, it’s becoming easier for people to generalise about exploitation. In the blog I mentioned briefly that one of the legitimate uses of sex working was to provide sexual experiences for those who cannot find them through the ‘normal’ channels. This includes the disabled, who can often find it very difficult to find sexual partners or even to have sex ‘normally’.
Although I didn’t develop that theme, it got me thinking about my own difficulties with sex, caused by my chronic pain condition which began eight years ago. I have never seen the issue of sex treated adequately, or even at all, in books about chronic pain, no matter how excellent they are in many ways. And this is strange, because sex or the absence of it is a very important part of most people’s lives. The difficulties that chronic pain and illness cause for people’s sex lives are very significant, and can cause great distress. I know I’m not the only one who is affected by this. So I decided, with the encouragement of a friend who is writing her own blog on the subject, to discuss the issue here.
In brief, here’s my own experience. Without going into too much detail, my chronic neuropathic (nerve) pain is centred mostly in my groin area, and is exacerbated by simple activities such as walking, standing or sitting for too long. I have to pace myself with all these activities, neither of which I can do comfortably for more than a few minutes, most of the time. So you can imagine what sex does to this painful condition! (which at its worst, is very painful indeed). Sex has to be timed carefully for when I feel at my best. It also tends to be brief, careful and somewhat inhibited. My partner and I still have a sex life, but it’s much less frequent and obviously not the same; neither as satisfying or excited or uninhibited, as it used to be. Both of us very much aware of the possibility of flare-ups, our enjoyment is tempered by a continual effort to be careful and avoid any lasting increase in pain.
Since being in pain, I’ve also felt a gradual but not total loss of libido. It may be partly the medication I’m on, and it may also be that I’ve adjusted to not experiencing sex as often. But I also think (and other sufferers have said this to me as well) that when we’re suffering we don’t feel sexy. During flare-ups, I feel less like a man and more like a child, because I feel sad and vulnerable and in need of ‘looking after’. It’s aggravated by the fact that I often suffer anxiety during these times, which makes me feel even more vulnerable. All this greatly changes the nature of a relationship.
I think when we’re sick or suffering, the need to get better or to be in less pain becomes an over-riding priority. Other needs take second or third place. I guess, in evolutionary terms, this makes sense. The need to reproduce is of paramount importance to all animals, but we need to survive first if we’re to be able to have sex! When we’re suffering, we go into fight or flight mode, and from the point of view of our nervous systems, our survival feels threatened. So sex, along with many other human and animal needs, feels less important. Recovery, or feeling better, feels all-important.
Perhaps this why I (and other people I’ve spoken to) feel an increased need for physical affection, even while our libido is reduced. Because we’re suffering, we need love, reassurance, and ‘holding’. We need comfort and cuddles more than we need excitement. We feel a bit more like a vulnerable child, and a less like a virile adult.
When I can afford it (which isn’t often!), I treat myself to a professional back and shoulders massage. This is very nice, a beautiful sensation, but it isn’t exactly sexual! It creates a much needed relaxation more than it does arousal. For this reason, it seems to have more in common with the gentle reassurance of ‘affectionate’ touch than it does with sex. There’s no love there, but its effect is calming and reassuring, and only little bursts of intense pleasure relate it to sexual excitement.
There’s another aspect to sex and chronic pain or illness. Because sufferers can be disabled in varying degrees, it can also be difficult to ‘find’ sex in the first place. I know that if I wasn’t already in a relationship, it would be very difficult to meet potential partners (I never found it that easy anyway!), or to find someone who could be patient enough with the sexual difficulties my chronic pain leads to. Who would, in short, be willing to forgo a fully-active sex life herself. And I’m lucky; I’m far less disabled than some! Some people find having ‘normal’ sex impossible, and yet they have the same desires and needs. Where do they go?
In response to my article on sex working, a friend sent me this link to an Australian newspaper article: http://www.adelaidenow.com.au/news/south-australia/disabled-deserve-sex-rights/story-e6frea83-1226310720177. The majority of this article concerns one woman’s attempt to get the law changed, to provide government funding to allow the disabled to visit sex workers – and so have sexual experiences that would otherwise be denied to them. But what struck me, and touched me the most was the quote from the
sex worker at
the end of the article: "It's often a
long time since someone (with a disability) has been touched in a sensual
way," she said. "I'd really like to see a time when we can speak
about it openly." Adelaide
I find this very moving. We all of us crave touch, and sensual touch is very special. Even though I have a (limited) sex life, I found myself instantly relating in a powerful, emotional way to that sex worker’s words. It’s a reaction which tells me that, even though sex and physical affection are not absent from my life, I have needs which are greater than the part being fulfilled. I haven’t had totally relaxed, free and uninhibited sex for the past eight years.
As another friend said to me, all the difficulties around having sex with chronic pain, illness and disability create yet another loss for us to have to deal with. Yet it’s one that, for natural reasons, is very hard for us to talk about with others. I guess I’d like the non-disabled, non-sufferers, to think about this for a while, especially in the current social and political climate. The British government, and the newspapers who support it, are encouraging hostility to the disabled, who are seen increasingly as work-shy benefit-scroungers. This is classic politically-motivated scapegoating; the disabled (and others on benefits) are being blamed for the budget deficit, which they didn’t cause. And it seems to be working; verbal and physical abuse of the disabled is apparently on the increase. But think about what we have lost, and then think what being ‘work-shy’ would involve sacrificing. We often cannot work, and yet our means of basic survival is being cut and many are plunged into poverty or even made homeless. Many can’t walk, or have difficulties walking. Many can’t get out of bed. Holidays, or even a drive out of town, are a no-no for many. Our relationships can suffer, and we can lose friends or even the support of our families. And on top of that, we also have to deal with the total or partial loss of sex in our lives. So many of the things that non-sufferers take for granted in their lives…
One irony is that chronic pain sufferers can probably benefit from a passionate and satisfying sex life even more than ‘healthy’ people can. Sex is one of those things (like other activities, such as laughing and eating spicy food, would you believe!) that releases endorphins – opiate-like substances which are released naturally by the body. Also, pleasurable sensations send messages to the brain from the peripheral nerves, up to seven times faster than unpleasant sensations! So the sheer pleasure of sex can help to block pain signals from even reaching the brain. I presume that this explains why I often hardly notice my pain while enjoying sex, but find myself suffering afterwards. My body is telling me to let go and get carried away, but my mind knows that if I do I may pay for it later. A short-lived increase in pain I don’t mind, but a really big, lasting flare-up? No thanks! And so my sexual experience, despite the physical and psychological benefits of having sex, is diminished – along with that of my patient, long-suffering partner.
It goes without saying that many of these losses, including the sexual ones, are felt by our partners as well. They struggle with us, knowing at close hand what having a chronic illness means for sufferers and their loved ones. Those of us who have understanding partners are very lucky, despite all we've lost. We have the understanding and compassion of those we love the most, and even if we don't always have sex, we have physical affection and love. How much harder for those who don't have that either...
The painting at the head of this article is called 'Bride of the Wind', by Oskar Kokoschka.