Living Differently - The Mirror

I still get somewhat embarrassed mentioning the fact that I am sick. Shame can creep in pretty quickly and I feel I should apologise for not being fit or energetic enough to take part in a more active life. But thankfully that's only part of the story. Perhaps this is an indication that my thinking is more about social conditioning than it is about my personality. It's easy, for us all, to get the two confused. Luckily I have a stubborn streak – when something needs to be said I will not shut up, especially when the gauze of silence hides the truth. And it's this that prompted ‘Living Differently’ - a series of articles and interviews focussing on those affected by chronic and long-term health conditions. I'll start by something that we all have in common and that's sex. Or more precisely intimacy, because even if we are not involved in a physical relationship it's a rare person that can live without closeness and contact for too long.

I had a conversation with a friend about intimacy and chronic illness. He has written an intelligent and refreshingly open article about chronic pain and sex. I read it and everything changed. One of the things he talked about was about feeling less like an adult and more like a child when he has a flare up. I know that well. Although I often spend days on my bed in a state of undress (or more precisely pre-dress) I don't feel like the temptress. I feel I am living outside my 'old life', one where I felt I had more choice and more freedom with what to do with my body and when. It's hard to feel sexy when you are exhausted and anxious, when the body you once knew does not behave in the same way.

I've stopped wearing make-up, stopped dressing up and my main concern is how cosy I feel. This body has medical appointments, it has treatments, it does (thankfully) get hugs. It doesn't go dancing or swimming or cycling anymore, it does not run for buses. I realise I have to find a whole new way of being sexual, one that involves persistant and gentle affection, one thats emphasis is on sensuality rather than hitting the high notes at all hours. And sometimes, I hate to admit, I just don't feel pretty enough in myself to get laid. Perhaps I have to find a whole new pretty too.

Vulnerability, freedom and exposure are all part of sexual interaction. The language of sex, at its best, is one of communion. But for now the orgasmic release feels too extreme at times. As much as the rush of endorphins are healing the intensity feels frightening, like a freefall parachute jump, when I already feel like I am falling in to the unknown unaided. Now I have, to some extent, lost the sort of control I used to have over my body 'abandon' feels more scary. I feel physically vulnerable a lot more of the time and so that also plays a different part in my (sex) life now.

This morning I woke early and thought of Steve McQueen's recent film Shame. In it Michael Fassbender plays Brandon, a sex addict. His life is ruled by one alienating sexual encounter after another. When he finally meets Marianne (played by Nicole Beharie), a woman whose company he clearly enjoys, he takes her to a lavish hotel. The same hotel he walked past previously where he glimpsed a couple having sex against one of the building's large glass windows. In the hotel room he cannot perform sexually with Marianne and she leaves. Brandon is then seen having sex with a prostitute, against the window, re-enacting the scene he had witnessed earlier. The glass is all about the surface, about looking and not being seen. It's also about hiding behind something that's transparent. I think that's what spectacle does, especially sexual spectacle - porn - it offers a public place to hide out.

As much as being mostly housebound with illness is about invisibility, it is also about grief. I wanted to write about sex but I have ended up here, trying to work out what this new world has given me. And what is has taken away. If I look closely at my life before I got ill, I know how visible I have wanted to be. Sex was my way of being seen and being validated. And when I think of my more extreme encounters it was my way of hiding out. I don't have that option any more. It is both a blessing and a trial.

What's left is the constant longing for closeness. Friends who also live with chronic illness say the same. Their bodies may not always be robust enough for physical activity but the need for tenderness remains. It's no coincidence that so many of us have close relationships with cats, those small-pawed creatures who demand to be stroked and held, whose needs so clearly mirror our own.

I had hoped to write something about loss, how being ill has robbed me of the sexual dynamism and the relaxed intimacy I was used to. Instead I have unearthed a different truth, one I would not have faced so clearly had I not become sick. There is not one story, there are many and each are different. This one is mine.