Thursday, 24 May 2012

When Sex is a Pain

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: 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 Adelaide 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."

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.

Monday, 14 May 2012

Meditative Fish

A woman I studied with on a degree course in the 1980s is now a very fine and successful artist. With her love of nature, almost all of her paintings are of landscapes or animals, and I have a big and beautiful print of hers on my bedroom wall. Entitled ‘Evening at Sweetbriar’, it’s a calm and atmospheric painting of a fishpond, with trees and the rising moon reflected, and two koi carp swimming in the depths below. It’s a magical and, for me, a rather comforting picture.

Last week, my partner Angie and I discovered that a neighbour of ours has a wonderful fish pond in her back garden, and the fish are impressive: large and graceful, some orange and others of different colours and patterns. We took photos of them at the weekend, and behold! – the results are very like Rachel’s paintings. I spent a couple of happy hours editing them on the laptop, and cropping them into pleasing compositions. One of them I’ve posted above, and if you imagine it created in paint instead of pixels, you’ll have a good idea of Rachel’s work.

Working on my photographs is very therapeutic for me, all the more so because like Rachel, I tend to focus a lot on nature and wildlife. Being at home a lot of the time because of my disability, I can get isolated, anxious and occasionally depressed. I have to work quite hard to stay positive, especially when I’m in a lot of pain. So just looking at nature, even if on a computer screen, lifts my mood because I’m focussing on beautiful things. The fact that I’m being creative at the same time – doing my best to create a beautiful thing – helps even more.

There’s something meditative about these new fish pond photos, I think. I need to remind myself to slow down a little, because I’m on a high at the moment after winning an appeal against a decision last year that I was able to work and therefore ineligible for state financial help. Now that all the anxiety and stress have subsided, I want to get out and experience new things – but I also need to remember that my body can only cope with so much. So right now, I’m working on these photos and enjoying the sight of the cool colours, the bright fish, and the reflected sky. Thanks to my camera and a helpful neighbour, I can enjoy these even without having fish of my own.

After this experience, I would love a fish pond in our garden, though. I could sit there and breathe gently, mindfully aware of the ever-changing movement and colours of the gentle scene below me. And every photograph I took would be different.

There’s just one problem: our darling cat Tally. She’s definitely a fisher cat, because she sits on the edge of the bath and reaches for our toes! So I wouldn’t trust her with no fish. She’s too slow to catch insects or birds – although she manages earthworms and the occasional moth. But I wouldn’t be happy to see her jump through the cat flap with a bleeding, chunky koi carp in her mouth. Although judging by the size of some of them in Val’s garden, she wouldn’t need another meal for days…

Sometimes you can’t have everything you want. I’m quite happy to sacrifice a fish pond as long as I can keep Tally!

PS: You can see Rachel Lockwood’s art at

Thursday, 3 May 2012

Self-Compassion First!

This is an extract from a draft of a chapter for my new book, whose working title is, ‘Healing the Second Wound: A Compassionate Response to Chronic Pain and Suffering’. No doubt much of the text will change before I try to get it published. I thought I’d use this part in my blog as a defence of self-compassion, which many people confuse with self-pity or selfishness, believing that compassion for others is only what matters. On the contrary, it seems clear to me that self-compassion has to come first. If we can’t show compassion for ourselves, we are liable to damage ourselves, and then we cannot effectively show it to others either. The example I give from my own life, towards the end, is a case in point.

The Dalai Lama defined compassion as ‘the state of wishing that the object of our compassion be free of suffering… Yourself first, and then in a more advanced way the aspiration will embrace others.’ Buddhism is strong on compassion. One of my favourite quotations from a Buddhist is by Rob Nairn in his book ‘The Tranquil Mind’: ‘The most important thing in all the world is to be kind.’ It’s a simple statement, but true. Imagine how universal kindness would transform the world and its fortunes!

The Dalai Lama’s definition is interesting because it puts self-compassion first, before any compassion we can give to others. This is the opposite of what many of us are brought up to believe from childhood onwards. So often we are taught to go out into the world and put other people’s needs first, if necessary sacrificing our own. Although it’s an understandable belief, an awful lot of guilt is created by this, and a terrible amount of self-punishment and suppression of the most natural basic needs. Sometimes this suppression – which, when it becomes unconscious, is called repression in the Freudian sense – can only allow our thwarted needs to be expressed physically, through pain or illness. We saw in Chapter Four how the effects of trauma can become ‘locked’ into our bodies, but normal tension and stress also have physical effects; often being expressed in the muscles, causing back pain or irritable bowel syndrome. Chronic back pain, for instance, is often correlated with unhappiness or frustration at work, where someone is in a job but getting no satisfaction from it, and constantly under pressure to meet targets or deadlines imposed by someone else. Sacrificing our own needs can become such a habitual feature of our lives that we are unaware we’re doing it. But self-sacrifice, on a regular basis, causes much unnecessary suffering.

Often, if we are willing to get our needs met, such as the emotional and psychological needs which inspire some people to go for counselling, other people may regard us as selfish or navel-gazing. As a counterpoint to the talking therapy industry which is so popular in the western world, there is great hostility to it in many quarters. “Why can’t this person just pull themselves together and get on with it?” people say. I suppose it is possible for some to get addicted to counselling or therapy. But people often have very good reasons for embarking on such a journey: relationship problems or childhood traumata, for instance. Studies suggest that in the United States, between 20 and 25% of women and between 5 and 10% of men were sexually abused as children. Think about that for a moment! Embarking on therapy to deal with these traumata constructively and with self-compassion, takes a deal of courage and some wisdom too. Less constructive ways of dealing with abuse include self-harm (self-abuse) and abusing others. Are those ways less selfish than treating our emotional needs with compassion?

It makes sense to realise that we have to help ourselves first before we can help others effectively. This means that compassion follows on from self-compassion, not the other way round. It’s almost impossible to give attention to others if we’re trapped in our own internal struggles, and likewise we can’t begin to empathise with others – their fears, joys, struggles and hopes – if we take a hard line on our own feelings. Once our own difficulties become workable, we can extend our compassion to others, and truly go out and participate in the world, giving what we can to help others be free of suffering.

A friend of mine who experienced a major and traumatic bereavement, finds it impossible to offer emotional support to bereaved friends; it simply hurts too much. Her counsellor said to her: “You can’t give what you don’t have.” It’s true! Our own healing has to come first.

In the context of having chronic pain, if we ignore what our bodies and emotions are telling us, we are likely to make our own suffering worse. This depletes our energy and our ability to help others. It will also make life harder for those around us, because they will have to deal both with our emotional distress and our diminished physical capacity. So either way, it makes sense to look after our own needs, and to treat them with understanding, patience and compassion. Not doing so causes problems for everyone, starting with ourselves.

Before I had my nervous breakdown in 2008, I had been putting myself under stress for years, and at the same time berating myself because I still didn’t think I was doing enough for others. In my case it was anti-war campaigning that did the damage. I cared passionately about the suffering of millions of people in other countries, was beside myself with frustrated anger at the politicians who caused such suffering and lied to us in order to justify it, and was fearful of where such developments would lead us in the future. So: I was upset, angry and scared. I focused on these issues almost continuously, but because of my chronic pain condition I couldn’t get out into the world and campaign as actively as others. Neither did I, like friends I knew, put myself on the line by non-violently breaking laws that criminalised peaceful protest. Nothing I ever did was enough. I was pushing and pushing and pushing myself to campaign harder, despite being afraid and in stress already due to a chronic pain condition, and I certainly wasn’t treating myself with compassion. Is it any wonder that my nervous system, without the buffering of anti-depressants that I’d recently withdrawn from, finally seemed to decide it had had enough?

Trying to help the bombed and traumatised people of Iraq and Afghanistan, while not taking care of my own basic needs (including the need to feel safe), is a fairly extreme example of where non-self-compassion can lead. But I learned about the importance of self-compassion the hard way. I’ve had to learn how to gradually implement it in my life since, and I must say it’s better late than never! My hope is that this book will help readers to learn self-compassion in an easier way, because it really is the first step in managing chronic health problems of all kinds. We can, like the Dalai Lama says, wish ourselves to be free of suffering, ‘and then in a more advanced way the aspiration will embrace others.’

In Chapter Eleven we will look at ways we can extend compassion and kindliness to others as well as to ourselves, as this too is a part of getting well and regaining more of our lives once more. But for now, let’s focus on ourselves, and how we can help give ourselves the compassion that, in our difficult situations, we both need and deserve.