More Cripplesex.

One of the things in life that has really changed, since the serious onset of hypermobility symptoms, is sex. Sex is now an investment in a way that pre-symptomatic me could never have understood. The second that anything looks like foreplay, I have to start calcualting in my head; Quickie? Marathon? Creative? Energetic? Lazy? Do I have the energy for one of the above, but not the others? What are my contingency plans if I start then can’t finish, and will that be fair on my partner? How likely is it that I’ll break down? If I do, will it be a vague “Ow, that hurts. Right, half-time, continue in a bit” or will it be a screaming failure that ends in accident and emergency? If I have sex now, will I be able to do anything else for the rest of the day, and do I need to?

Atop that, there is the issue of morphine. First there’s “Have I taken enough that this will be fun rather than possibly painful?” then there’s “Should I have the sex now, whilst it’s being offered, or should I take my morphine and then wait, knowing that the opportunity may pass before I’m optimally sorted?” and then there’s the awful “Have I taken so much morphine that I can’t perform?” and the sneakily worse “Oh, apparently I’ve taken so much morphine that I can’t finish”.

And that’s even without going back over the awful meme of “If you’re on opiates, you can’t consent”, which I have raged about before.

Imagine that every time you want sex, even if the situation and timing is otherwise sensible, you have to think seriously about whether or not to let your partner know, because there’s an even chance that you’ll end up doing something that’s at best disappointing or at worst damaging. Imagine that every time your partner wanted to initiate sex, they knew that there was an even chance of you being hurt in the process, or of you just being in so much pain that you couldn’t even imagine having sex.

As you can probably guess, this will put a lot of strain on basically anyone’s ability to have sex regularly, or in a variety of ways, or with any kind of spontaneity. Both partners will end up cautious, effectively. When you know that there’s that one position that makes it easy, even if it’s nobody’s favourite, there’s a good chance that you’ll fall back on it more often than you’d like to. If a friendly hand-job is less of a practical risk than a gamahuche on a flying trapeze, you’ll always go straight for the former, even if the latter is more your cup of tea. The frequency of initiation will reduce, on both sides, as both sides get disheartened by hearing “No”, and as both sides mentally reduce the possibilities for sex (No more sex in the shower, it has to be on the bed because that’s more comfortable. No more sex in the mornings, because the anti-inflammatories have worn off by then. No more sex standing up, it’s bad for the knees. No more quickies, because the drugs make it difficult to be punctual…)

It’s difficult, and it’s difficult to negotiate this, even with a long-term partner; Saying “It’s my choice to risk an injury” is all very well and good, but in something that’s as participatory as sex, it’s not quite fair – When the injured partner is suddenly recoiling away and reaching for the anaesthetic, it’s naturally going to upset the partner that feels at least partially responsible for the injury. It’s not a physical injury, but it’s not conducive to the atmosphere.

And it’s something that it’s impossible to talk about, with even the best of doctors. Doctors don’t want to hear “Well, my sex life is kind of irregular and boring now” because they’ll say “Oh, just make sure it’s really, really gentle and always in the spoons position (which is actually really bad for your hips and back, by the way!) and that you always take plenty of time for foreplay and stop the second you’re in pain.” and in the process completely miss the point; If I wanted sex that was scheduled in for 9.30 until 11am on a Saturday, in one of the Two Approved Positions and of Designated Intensity, I could probably manage that. I’m not saying it’s not a good start, it probably is, but it’s dissatisfying and it adds to the feeling that life, as a disabled person, is always going to be regimented and planned in advance.

And, of course, if you then miss your Saturday sex-appointment, or if you hurt yourself during it, you’re going to have to wait another week. And then a week becomes a month, a month becomes a year, and suddenly you’re the self-fulfilling prophecy of the Celibate Cripple.

It probably all comes back down to talking to your partner and making compromises. Always having a standby, a sex toy that can finish for you, a position that’s less hard work, an agreement that it’s fine to carry on alone, or even just to sometimes be happy with completely non-escalating sex (as in, touching and teasing and doing sex-related stuff, but with no intention of really aiming for an orgasm, or of committing to anything that takes a set amount of time), so that if nobody finishes it’s not a “failure” because there wasn’t an aim. On the other end of the sccale, as much as it’s not ideal, get used to aiming for ambitious, failing miserably, then doing something less acrobatic. Investigate new positions, even ones that seem ridiculous. Get used to pausing to rearrange pillows, or to balancing on unlikely items of furniture because they look comfortable and are a good height. Talk, even if it’s just a quick check that things aren’t just comfortable, they’re actively fun. Don’t let people fob you off with the idea that the best a disabled person can get is sex that’s not painful. Bragging aside, I’ve had absolutely fucking transcendent sex, even with neoprene supports on every limb and a break for morphine in the middle.

I’m not going to say “Do these Five Hot Things for Awesome Cripplesex”, but here’s A Couple Of General Principles That Might Help;

– Talk about sex when you’re not feeling like having sex, so that new ideas aren’t all lost in a lustful scramble of getting to the point. Talk about sex after sex – What was good, what was bad, what could have been better, what suddenly seems like a great idea for next time. Be honest about what you can and can’t do when you’re in different physical states, and what you prefer, and find out your partners’ preferences too – Would they rather not start at all, rather than curtail halfway through? Is a hand-job when you can’t have penetrative sex better than nothing, or is it lemonade for whiskey? Is a mutual gamahuche more or less tiring than sex, or is it more complicated than that? Are they willing to lend a hand (or mouth) when you can’t reciprocate, and are they comfortable with recieving when you’re not interested in getting one back? And probably a million other questions that will spring to mind.

– Have sex when you’re feeling experimental, as well as when you’re really lusting for it. Not much takes the pressure to perform off better than knowing that it was an even throw between going to the corner shop to get breakfast, or having sex. Try out the slightly ridiculous things that you think will either work amazingly or fail disastrously. Try out new kinks that won’t stress the same joints, or at least might not stress them in the same way. Investigate toys for yourself and your partner, and see if they’re a less-energetic kind of fun. Try out different locations (Furniture, walls, suspension) and different positions (Don’t be shy about propping things with cushions), since it’s surprising what can turn out to be the “best” positions for unstable joints.

– Try not to count the “failures”. Nobody having an orgasm isn’t a failure, it just happens sometimes. Getting injured isn’t a failure, and unless it’s consistenty when doing the same thing, it’s usually best to dismiss it as just a fluke accident. If it’s always when you’re in the same position or trying the same thing, though, it might be worth taking that out of rotation until you’ve worked out exactly what it is that’s causing the problem. Giving up halfway through, when you’re desperate to carry on but physically can’t, isn’t a failure, it’s just one of those regrettable things that happen (and is also a good reason to have a “carry on without me” clause if your relationship works like that).

– Explain, and ask questions; Reassure your partner that they’re unlikely to hurt you, and that you will tell them immediately if anything has gone really wrong. Explain that there are things which will briefly hurt, but where it’s safe to carry on. Ask them if there’s any things which they’d feel better doing for safety’s sake, beyond what you’ve already suggested.

– Find sex-related things which aren’t penetrative sex, or which aren’t even sex at all, and do them. Watch porn? Read smut? Take nude photos? Go shopping for sex toys? Talk about your fantasies? Do it together.

– Find non-sex-related things, and do them in the time when you’d be having sex. Anything where you just get a chance to be interacting with, probably including touching, your partner. In private, and in a way that you don’t generally do with other people. Even if it’s just holding hands in bed and talking utter nonsense, or brushing each other’s hair, or sitting on each other’s laps whilst playing chess. I don’t know what you do, but keep doing that until you get the energy to have sex again.

Sex when crippled is weird, and it’s not going to get any less weird unless we talk about it. And unless we talk about it, people are going to keep assuming that we don’t have it, and that’s just wrong.

And I’m going to keep rambling about it, at least.


5 thoughts on “More Cripplesex.

  1. Actually I thought your tone was very finely judged. I wasn’t coughing into my morning coffee in embarrassment, but I was left in no doubt as to what you were getting at!

  2. Hello. I just discovered your blog as it was recommended to me by my friend Cathy, above. I’m looking forward to reading more from you.

    This post is so open, well written and finely judged. I have severe POTS, and very severe ME. I have been completely bed bound for years. I haven’t had sex since splitting with my last partner, 11 years ago, aged 28, because he couldn’t cope with my ever-declining state of health (I wasn’t completely bed bound when we broke up, but I was very physically limited). I recognise all the issues you describe of having to finely tune or weigh up, ‘if I have sex how many days will it be until I can walk across the room again/do I need to do anything else in the next few days?’ Or, ‘If I have sex will I be able to sustain it until the end?’. And my partner’s increasing fear and reticence about hurting me, and frustration that he couldn’t lose himself in the moment and ‘throw me around’ as he put it at the time. And then the sudden breaks taken during sex due to pain, or my heart rate rocketing and not being able to breathe. I could go on and on but you get the picture.

    And now, my health is much worse than it was then, and I wonder whether I’ll ever meet or be able to have a relationship with anyone again. I just think it’s incredibly important to talk about this stuff, and I never have. So thank you.

    One question: do you ever consider issues around privacy and ownership of your body because you’re disabled? I don’t know how independent you are, but I have to be washed in bed by carers, and have spent months at a time in hospital where personal care might be carried out by one random stranger to the next, one day to the next, so I’ve lost the sense of privacy I had around my body, which alongside the enforced celibacy, changes one’s perception of one’s body and oneself and interrupts nearly all sense of being a sexual being. Maybe it hasn’t come to that for you. I hope not. It sounds like it hasn’t.

    Anyway, thanks for writing this and apologies for the long, rambling comment. I plan to follow your blog. Take care.

    • Thank you for the wonderful comment (Sorry it took a while to post, new commenters get automodded for the first three or four comments, I think, and I’ve been out)

      Good question about privacy and ownership – I know I have a very strange attitude to privacy; As well as having spent most of my teens being manhandled by physiotherapists, I’ve been washed and dressed by very understanding friends and professionals enough times that I literally forget that there’s a taboo around nudity to the rest of the world. Once had to be reminded by my partner that I couldn’t just nip out to put stuff in the bins wearing only my pants because, as I saw it, the neighbours had already seen me in the state which I thought was most taboo due to vulnerability – Fully dressed, but strapped to a backboard and semi-concious with nitrous, being loaded into an ambulance. I couldn’t understand why someone just seeing my bare arse was considered to be more of a violation of privacy than someone seeing me actually needing medical treatment. Likewise, for my own odd reasons, having someone cut my nails or wash my hair is more intimate and nerve-wracking than having someone dress me or manipulate a limb (even if for the latter two I’m in a state of undress). Possibly paradoxically, I feel like I’ve lad license to decide for myself what’s intimate and what’s not, since so much of the stuff that a lot of people would consider “private” isn’t. Maybe I’m just drawing boundaries where I can, because there’s so many places where I can’t. I’d actually love to hear how everyone else feels about this, since it’s something that I’ve not really thought about much before now, and I don’t know how far off-kilter my own views are.

      I think (actually, no, I know) I’m really lucky in that my partner has stuck around – Even if my sex life is increasingly just an abstract concept, he still acknowledges that I have the want, so I still remember that I do as well, if that makes sense.

      My heart goes out to you – I must admit, I live in fear that if me and mine ever split up, I won’t be able to meet someone else. It’s the tricky question that’s probably always going to be difficult to answer (And that the answer will probably be different for everyone) but, I think that people in general are getting more open about the idea that sex and relationships in general should be talked about, and not just in the “101 awesome ways to have mindblowing sex” kind of way, but also in the “These are the issues that I have around sex, and these are the problems I have with new people, and I’m willing to listen to yours if you’ll listen to mine” kind of way. Of course, progress is slow, and it’s still notably terrifying to even imagine having that conversation.

      I hope that you can find a way to broach the subject, and that whoever’s listening is accepting and helpful about it.

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