Living Differently - Intimacy

Living with long term health issues affects everything we do. And this includes the most intimate aspects of our day to day living. I talked to some close friends about how illness had impacted on their sex lives. People were very generous in their responses. I've changed the names of the interviewees due to the sensitivity of the subject matter.

Sam is in a long term relationship.

"Our relationship started before I became ill and we have been together many years, the majority of which I have been unwell. It has changed so much in terms of what we can do as a couple and what we can enjoy together. It is hard to be spontanous or find anything new or different to do and we really just spend time quietly together at home, with the occasional trip out for a couple of hours. I think generally we are a strong unit and have adapted quite well to this way of life, but it does cause extra pressure and responsibilty on my partner and I don't like seeing the effects of that stress. My partner was very understanding and supportive from day one, despite our relationship being relatively new at the time there was no hesitation in taking me and the illness on, though neither of us had any idea it would be such a permanent feature in our future lives.

I live with my partner. This has huge benefits for me in terms of having company when I need it and being cared for. It can be hard seeing how much their life has to change and be limited to accomodate my needs. I find it helps to be cared for and loved by a partner, rather than living with a parent. I feel less childlike in my needs and more equal and appreciated for what I bring and offer to the relationship.

It has changed our sexual relationship a lot, as before I got ill and early on when I was less severely affected, we had a great sex life. This got harder and harder to fit around my illness and we started to plan it so that I could rest in the days before and after, but it took a lot out of me and caused me a lot of muscular pain and exhaustion. Over the years it has become less and less frequent until maybe a year or two ago each time we tried it, the act itself became too painful for me to continue past a certain point.

My partner is not happy to participate at all on the basis that we both do not both get the same amount of pleasure from it. I still experience myself as a sexual person and I am still grieving the loss of my ability to properly orgasm, which was something I enjoyed very regularly before. We are still physically close and are intimate, but I miss that intensity and giving my partner such pleasure very much. What closeness we do have is very comforting and loving and helps me so much in coping with my symptoms and daily reality. We laugh a lot together and that is so important to me.

I have heard disability campaigners try to challenge the idea that disabled people are not sexual and cannot have sex. They state that WE DO with much enthusiasm. I understand why (and I am a sexual being) but this still makes me feel excluded, as someone with a chronic and largely invisible illness who cannot have sex, from wider disability movement. My experience does not always fit with that of other disabled people or their aims/assertions, though I completely identify as disabled as my illness and fairly severe impairments seem permanent. Our experiences are so diverse and I hope that one day a more subtle and complex "disabled voice" that can emcompass all that will emerge."

Marie is single and has been living with chronic illness most of her adult life.

"I very much want to be a part of a family, to have somebody who's affectionate to me and loves me, somebody who wants to come home and tell me how their day has been and see what I've been doing, all those small things. On the other hand I'm basically asexual at the moment - I have no sex drive and my physical issues mean that having any type of sex would be a huge issue anyway so I'm really not motivated to do anything about the sex drive issue.

I was in a relationship for several years and there was some sexual activity but it wasn't frequent and we were very constrained in what we could do (and when) because of my low energy levels, my pain, etc. At the time my partner had a relatively low libido and was a very affectionate person so it wasn't a huge hardship for him from a sexual point of view. In the end the relationship didn't continue and my being sick was certainly a huge part of that, but I don't think the sexual stuff specifically was really much of a factor in the relationship ending.

I've been sick for basically all my adult life. When I got sick I was still a virgin, and although I have had periods of time where I've been sexual I think my illness has HUGELY affected my experiences of sexuality and how I see myself. I don't have any experiences of sex that don't include pain and fatigue and dealing afterwards with flare-ups of symptoms. I'm really quite happy now being asexual. I do masturbate occasionally but not very often, probably once a month at most. Most of the time I'm so sick that I really have no sex drive, no urge to masturbate or have sex.

I want physical affection, casual touches like when you're both in the kitchen and you put a hand on somebody's back as you brush past, hugs, curling up on the sofa with somebody's head on my shoulder or my head on their shoulder. I like other sensual pleasures too - gentle massage, cuddling my kitty, listening to glorious inspiring music, luckily I can access most of those without being in a relationship."

Lola is married and talks about the impact her illness has had on her relationship.

"We have been married almost 9 years. I am lucky that I have a supportive husband but I see the look in his eyes that sometimes he thinks I'm just lazy he has never said that but that is how I feel. We are still close and take the time together and cherish it.

It has affected our sex life greatly. Not that we used to have sex every single day but now it can be weeks. In my first marriage, my first husband died in a car accident, I never had to be the aggressive one but since my diagnosis I have to be and I'm not used to that. I don't feel sexy at all. I have lost about 10 pounds but I still feel awful about myself.

I would just like to add that even with supportive partners there are needs that we need met and maybe we need to start saying what those are. Since my diagnosis I feel the need to keep apologizing for everything including sex."

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.