Sex when you have a disability

I was flicking through instagram earlier today and came across an amazing post by @wheely_good_time.  It was a group of spoonie sex tips (learn about the spoon theory if you don’t know what a spoonie is) and I loved them!  I instantly bounced them up into my stories and saved them.  They are practical tips and reminders with a nice dose of humour and I love that.

I especially like tip 6 about positions which suggests starting with spooning!  And I think positioning is something that is really important with some disabilities or chronic health conditions.  Do you feel better when you’re sitting or laying?  Is your wheelchair the most comfortable place for you?  Incorporate that into your sex life!  Do you find having your legs elevated on a cushion helps you feel better?  Well that’s great because it can position you for better sex!  Use the motion of a wheelchair or the many positions of a riser recliner in your favour.  Research positions together and you’ll find out what you both like.

“Use a powerchair? Explore the tilt function to get your body in a comfortable position for self-exploration. Depending on your mobility, explore the sensation of shifting or rubbing your weight on the seat. Go for a jiggly, bumpy ride on a rough surface. Play around with the position of your belt and/or straps if you want to see what light bondage feels like.”
ACSEXE+

I’ve talked on my blog about communication before but I want to reiterate that I think a safe word is important. You need a way to distinguish between moans of pleasure and the screams of “shit my hip just dislocated”.

Sex isn’t a race.  Quick sex can be fun and has it’s place but we are so often shown this idea of destination sex.  Sex which is just about penetration and anything else that’s happening is just to get to that goal.  Sex without penetration can be more creative. It can take an afternoon and go in fits and starts as energy allows.  You can take a breather and just lay there together.  These things are ok and can create intimacy.

“In the movies, couples are always portrayed as being flawlessly sexy and romantic. In reality… people get cramps. They hit their head. Their stomachs make weird noises. They pull a muscle. And when you live with chronic pain, things are, truthfully, even more likely to go a bit awry. Don’t be afraid to laugh with your partner – it may even bring you closer together.”
– 
The Mighty

I’ve said before but think about timing.  I know that there is this idea out there of spontaneous sex that often happens after bedtime but in reality, we could be having better sex if we listened to our bodies.  When are you most awake?  When do you feel at your best?  If that’s sunday lunch time then make the most of it!  And if your bed is like mine and full of random stuff – positioning pillows, books, bears… – then move them before you get started.  That way you don’t have to stop midway to make things more comfortable.  It also means that if, like me you are fed overnight, you don’t have to add in navigating extra tubes.

Play to your individual strengths.  If one of you is physically stronger, make them do more of the physical work.  You can give back in other ways – dirty talk, creating fantasies, excellent playlists etc.

Anyway, this post was mostly to link to the cool instagram post and to revive the conversation around sex and disability.

And remember that sex releases wonderful hormones which can help with pain!

Related reading:

Let’s talk about sex…

Earlier this year, there was an issue of Oh Comely which had a call out for personal stories about sex and it got me thinking.  Whilst I have long championed the need for comprehensive sex and relationship education in schools and youth clubs and seen the value of it first hand, and whilst I have post after post on my blog about sex, I haven’t had a particularly great sex life.  And to say that feels like I am invalidating myself when I’ve previously stressed the need to speak about sex.

To say that you haven’t had a particularly great sex life feels like you are openly telling the world you are a failure.  And I have felt like a failure because of my sexual experiences.  I want to make it clear here that this isn’t an attack on my partners.  That said, the first (consensual) fumble I had was pretty horrific and came an hour or so after my first, also not great, kiss.  The latter was a little like an octopus had attached itself to my face, the former was in the dark in an empty outdoors shopping centre.  Cold hands forced themselves under my clothes, my breasts were grabbed like they were pieces of meat and then a security guard turned up.  I stayed with that partner for far too long.  But aside from more fumbling and a pretty horrific experience where I blacked out during oral sex, we never went “all the way”.

Enter partner two.  A much better person, much better kisser and someone I still love, platonically, today.  Partner two showed me just how bad partner one had been… Although partner one did, over time, become better at kissing.  I hope their spouse is grateful to me.  And yes, facebook stalking does reveal they are married.

Partner two was the first person I really wanted to have sex with.  And things were great.  Right up until penetration.  It just would not work.  And as sex is such a natural behaviour, and as no one ever tells you about the problems (aside from erectile dysfunction), I thought I was broken.  I felt great shame and I felt like I was letting my partner down.  I felt like I wasn’t a “proper” woman.  I was a failure.  Guilt ate away at me – I wasn’t giving my partner the full sexual experience, it wasn’t fair on him – and I was so ashamed of myself and my inability to do this one, supposedly easy, thing.  I mean teenagers can do it so why, at 21, couldn’t I?

At the same time as I was failing at sex, I was telling people about how important high-quality sex and relationship education is.  I was advocating for pleasure focused information.  I was championing the need for women to stand up for themselves and get what they need out of sex.  And here I was, a failure.

At one point during my relationship with partner two, I was volunteering at a youth club.  We had a night where we got out the demonstrators and condoms and other forms of contraception and we sat down with a small group of young people and talked sex.  We were really open, we answered their silly questions whilst they relieved themselves of some of their nervous energy.  And in answering the questions honestly and openly, they started to ask some of the more pertinent questions.  The group included some lovely girls who were reasonably informed but also some lads who had probably been kicked out of their school sex ed class for being rowdy.  They were also the same guys who regularly boasted about buying condoms.  Yet when the demonstrators came out, they put the condoms on inside out.  They didn’t realise there was a right and wrong way.  And so we sat there, casually explaining why you needed to put it on the right way and why you pinch the end.  It was a low pressure, really open discussion and I really think that everyone of those young people took something valuable away, whether it was knowledge or the notion that it is ok to ask questions and to talk about sex.

And then, I went home to the partner I could not sexually fulfil.

By this time, I had seen a doctor who gave me a word – vaginismus – which made me feel a tiny bit less like a freak.  She had advised using vibrators, starting small, and working my way up.  This is sound advice and it chimes with everything the internet had to offer back then, which was incredibly limited, but we didn’t really get anywhere.  Later I would learn that my genetic condition – Ehlers Danlos Syndrome – was likely contributing to my troubles.  Essentially some of my muscles work overtime and some don’t do very much, the muscles around my vagina are some of those which work overtime.  Every time anything comes near it, they clamp down.  Tampons, smear tests, coil insertion, they are all out of the question.  For a long time, I thought there must be something physically wrong with me down there.  Alongside this I was anxious that I might have been sexually abused and blacked out the experience*.

I was too embarrassed to talk about this with my friends and when sex was discussed I sort of nodded along as if I could relate.  Penetrative sex is a normal, natural process, without with humans would have died out millennia ago.  For thousands and thousands of years, women have been able to do this one thing that I could not.

Things are different today.  Today I am more confident about speaking up, I am more confident and I live by the words I’ve preached for the last couple of decades – sex is not defined by penetration.  We live in a world where penis in vagina sex is privileged above all other kinds, a world where penetration is seen as the end goal, a world where other sexual activities are labelled foreplay.  Today I am much more confident about shouting this from the rooftops.  I am much more confident that my assertion that there is no right way to have consensual sex is correct.  I am much more confident that my version of sex can be just as pleasurable.

Today there is more information out there.  Vaginismus even has a page on the NHS website which it didn’t when I was trying to figure things out ten years ago.  In some ways things have changed a lot, there is more information out there, but in other ways, things haven’t changed at all.  We still assume that sex is about penetration and we still don’t discuss sexual issues beyond erectile dysfunction.  Our view of sex is still filtered through a patriarchal, heterosexual lens.  I hope by sharing my story, by speaking up, that I can help someone else who is going through a similar experience.

I haven’t had a particularly great sex life but I am incredibly proud of the journey of self discovery that I have been on.  I have grown so much and I have a much more secure sense of self worth these days.

I haven’t had a particularly great sex life but everything I have to say about sex still stands up to scrutiny.


*I was abused, as far as I know I didn’t black out and as far as I know I wasn’t penetrated.  It took me years to accept that what had happened was abuse.  But that is a story for another day.

When sex hurts: Sex and chronic pain

The post is looking at when sex exacerbates existing non sex related pain rather than pain caused purely by sex.  Although not discussed here, changes to appearance, self esteem etc will all impact on your psychological wellbeing which can then impact on your sex life.

Chronic pain can be distracting, it hurts obviously and it can impact heavily on your life. Including your sex life…  Being in pain all the time does not make you (or at least me) feel sexy.

I wanted to do a post specifically about pain because I think the impact pain has on sex can be different to other disabilities. My first point would be to talk to your doctors… However,  I know that that isn’t always all that helpful… indeed, the NHS seems a bit lacking for in depth support…  (but yay, they have something, I guess)

I don’t have a magic wand to make sex with chronic pain easier but having sex can help with the pain so it’s worth a try, right?!  Orgasms cause endorphins to flood your body which helps with pain relief.

In no particular order, here’s some things to consider:

  • Communication – talk to your partner, its ok to be worried about the impact of sex on your pain, particularly if you’ve been avoiding it. Talk about where the pain is worse right now, should your partner avoid touching parts of you today etc
  • A lot of conditions fluctuate, make sure your partner understands this; being able to do something one day doesn’t mean you can do it the next.
  • Plan ahead. Unlike the movies, sex doesn’t always have to be spontaneous.  There are so many reasons why that doesn’t work such as children, working unusual hours, carers etc.  And if it helps, you can try and schedule in some rest time before hand and recovery time afterwards.
  • Find out what the best time of day is for you in terms of low pain, higher energy levels and higher libido
  • If being touched is painful (or even if it isn’t!), use none contact ways to arouse each other eg sexting, phone sex, talking flirty or dirty, mutual masturbation, pornography, erotic literature or try light touch such as feathers and silk
  • Massage is another way of being intimate, just be careful with painful joints, muscles etc
  • If your hands are in pain, try using your tongue
  • Warming the bed beforehand eg with an electric blanket may ease some of your pain
  • Sex toys might be easier for you and your partner
  • Cushions – well placed cushions can be invaluable! Think propping up hips etc
  • Where are you having sex? Would your wheelchair or riser recliner chair or electronic bed be more comfortable or in the water?
  • There’s also the impact of pain meds, they can decrease your libido, and you need to make sure you are on the right meds for you at the right dosage. If your pain isn’t controlled at all then of course sex will be harder
  • If your partner is your carer and you need help getting changed or into position, maybe you could ask someone else to get you ready or make the care into the foreplay.
  • Go long and slow or short and sweet, whatever works better for you
  • Have a think about what positions are best depending on where your pain is etc
  • Try not to stay in the same position for a long time if this causes you pain
  • Depending on where things are in your sex life, go back to basics with date nights, flirting, kisses, holding hands, cuddles…
  • Muscle relaxants, a warm bath, massage, a glass of wine might all aid things by relaxing you and your muscles
  • If something doesn’t feel good, say something.  Don’t assume your groans are conveying the right message! Maybe even have a safe word or be clear that stop means stop right away.
  • Use Google, look up good sex positions for ehlers danlos or whatever you have
  • edited to add, lube, lube is good

None of this is going to be a quick and easy solution unfortunately…

I’d really like to hear from you if you’ve got any more tips.

I’d also suggest popping over to The Hippy Geek who has joined two beds together so she can have an adjustable bed and still share a bed with her husband which I think is awesome*!

*be in no doubt here, as awesome as the idea is, if you ever end up in a relationship with me, you’ll be in the spare room! I love my double bed and all it’s very specifically arranged accessories and I’m not giving up my middle of the night internet for anyone!