Let's talk about sex... and disability

Today's guest post comes from a member of the community who wishes to not share their name. The post contains adult themes and frank discussion about sex so may not be appropriate for some members and younger people.
I am a member of the Scope community but I hope you will forgive me not introducing myself. I want to be able to talk frankly about sex so I am writing anonymously.
I am not a expert in sex. To be honest... who is? So many factors of life and love can change how sex works out, or sometimes, how sex doesn't work out. It's an important part of life yet rarely discussed frankly. Often it feels like society doesn't believe that those who identify as disabled are even having sex so no wonder it can be so difficult to broach with friends, doctors, carers etc.
About 5 years ago I became a wheelchair user after problems with chronic pain and weakness in my arms and neck began to affect my back. As you have probably experienced, this effects all areas of life but as we find ways of managing, gain tools, technology and the experiences of others, life gradually becomes less difficult.
I was very lucky that I have had access to counselling and guidance through my pain clinic with Jane. This helped me and my long term partner start to learn how to cope with the changes and the loss we have been through.
Because for some, including me, becoming disabled starts out being about loss. I lost my career I spent years studying for and dreaming about. Lost mobility and independence, lost any chance of a tidy house, lost anything that couldn't be accessed by wheelchair! I gained 'The Pain' which, like an unwanted pet, constantly needed to be attended too, fed with pain killers, exercised and given attention when all you want to do is anything else. And it felt for a while, like I lost my ability to be a wife. If I can't walk how can I have sex? My hands don't work well, medication makes me tired, stupid and queezy sometimes, and we're both tired from being up in the night... I unspectacular you know exactly what I mean.
One session with Jane at the pain clinic was about sex and it opened my eyes. Our sex life requiring the same work, tools and perhaps technology that other areas of our life needed to feel 'normal ' again. So we've been working hard to use what she passed and build on it in hope that sex can become more positive, more loving than frustrating and more fun!
So, I've put together some of the things that I think can help. Whether you have a partner of any gender, or are single and like to mingle, or enjoying your sexuality by yourself. It's all good! We all have things and experiences that make us feel good, turn us on and we all have challenges and barriers to those experiences. I feel it's all about reducing barriers as much as possible and increasing what gives us pleasure!
Our expectations of sex
Often what we see and hear about sex through film, porn, stuff our friends dare share either us..... Is not the reality of sex. Having spontaneous, vigorous, acrobatic sex for hours is no longer my body's idea of fun. But that does not mean our expectations must be lowered! Sex can still be passionate, naughty love making to be relished! But when our bodies change we must accept life changes including how we have sex.
Planning for good sex
Is there a time of day when you feel at your best? Can you grab this time and allow yourself to use it for time together (or alone) for sex. This is difficult to work round work, partner's work, children, etc. Because energy and time become even more precious. Perhaps sex is less regular but better because you give some of this valuable time to it. Personally my husband works shifts and we plan a bed morning every time that shift comes round. No pressure, but we look forward to this relaxed time when hopefully I am feeling better than in the evening or early morning.
Medication
Pain relief and other medication is a blessing and it's side effects are a curse. Tiredness, sickness, lowering libido are caused by so many medications... But pain relief is important for sex. There are times during the medication cycles that I have better pain relief and lower side effects, so I use this knowledge to our advantage.
Place and space
Where you feel most comfortable and confident is where you will have your best sex. Be open minded! Bed is comfy! But so too are wheelchairs, the sofa, a wet room etc etc... Use cushions, rolled up towels, a carer to help you get as comfortable as possible and work creatively with your partner so that pain is reduced. We reckon we have much more variety now compared to when I was more able bodied.
Sex is anything you want it to be
Because 'having sex' does not need to mean penetration. It can mean anything you want! Touch, see, smell and taste every part! If you don't like it, say so and don't do it again, if you do like it, do it more! Mutual masturbation is having sex, and can be fantastic sex! Using hands may be difficult so try using the rest of your body or toys and props instead.
Think about the senses
You have a bit of time along with your partner or yourself. Indulge your senses. Listen to music or anything else you fancy, wear clothes than feel comfortable or make it warm enough to wear nothing, enjoy using products whose smell remind you of good sexy times together, and if you can, keep the lights on as you are the most sexiest thing your partner can imagine looking at.
Sexual aids are easy and discreet to buy online
These can inspire or physically help in sexual arousal and activity. Lubrication can be effected by conditions and medication, age, menstrual cycle etc and this can also be bought to use. I have found olive oil and coconut oil very useful as they are safe and gentle on skin, mouths and genitals. Also, very cheap and don't need to be so well hidden. What ever you use do a small patch test first.
Talking
Being emotionally comfortable is as important as being physically comfortable. This is what I found the hardest to begin with. Talk about planning for sex, talk about what you do and don't like, talk about what's going well and what you need to change. Turn planning for good sex into a turn on for good sex. Be open to things going wrong and it not being a bigger deal than it is. Just because you have set time aside, put all this effort into preparing for sex, doesn't guarantee a mind blowing time together. But hopefully some mistakes can be laughed at, and all mistakes can be learnt from. good sex can also
More talking
Fantasy is the best tool as a disabled person having sex. In fantasy we can be anyone and do anything! What we want to do in fantasy does not mean we want to do it for real... So.... In fantasy a third person is allowed, we can change genders, we can go and do anything..... It also means that the brain does a lot of the foreplay for us who have less stamina. It also means if our partner can give more than we can, we can use talking to give back.
It's not all about us
Something Jane taught me was not to blame pain and disability for everything. There are other factors put there. For example a few years ago we were having real trouble with sex as my husband just was not reacting in his trousers how he always had before on top of everything else. I assumed I was just not as attractive, I've put on weight, I wasn't able to do what I used to do in terms of foreplay..... It took us ages to talk about it. Things were bad. Until we noticed other changes in him and he went to the GP. Turned out he had rock bottom levels of testosterone and is a type 2 diabetic. After he had help and medication this has all improved. It wasn't all about me!
I started by saying I'm not an expert and I'm certainly not an expert in your condition, your relationship and your unique sexuality and sex life. You are that expert, and your sex life deserves your time and energy, even when it feels like you have none left. Not easy! But an investment that can be very rewarding for yourself, your relationships and your physical and mental health. Definitely worth talking about!
Senior online community officer
Replies
This issue is something that no one spoke about when it happened to me and even now 3 years on, no one has ever mentioned it. It definitely needs more talking about as for everyone, sex is a normal part of life and I feel that as soon as a disability or chronic illness occurs, you become a 'sexless' person and this part of your life is pushed to one side and not addressed.
Thanks for highlighting this this issue and for your 'tips', I'm so glad that this is slowly becoming something that is being talked about.
"I'm trying to live like a random poem I read that ended 'to bloom where we are planted"
TK
I think talking about sex doesnt need to get weird or formal, for me if Im not ready to be open with someone about sex then I am probably not ready to be open enough to have sex with them
I think it is great to have these conversations here on the community though in a safe space.
Senior online community officer
As for the discussions themselves. There are certain things that are simply not done. One of the most important is to not discuss sex until you are certain it is about to be a part of the relationship. At that point you are hopefully close enough to have a reasonable discussion about it. Anyone getting together with a disabled person should automatically assume there are likely to be issues but they need to be overlooked initially until the relationship is on a firm footing and strong enough to withstand the potential difficulties. If you start worrying about the problems too early things are never going to work out anyway. In all cases relationships should be taken slowly and this should apply doubly so to the disabled.
TK
Senior online community officer
Yup.
But then as it's nightmare eating, moving, washing, going to the toilet.... Why on earth would sex be any easier?
It puts unbelievable strain on a relationship new or long-lasting and loving.
As for talking... I thought it referred to the talking we are doing, about sex as an activity for those of all body (and mind) shapes...
"Be open minded! Bed is comfy! But so too are wheelchairs, the sofa, a wet room etc etc... Use cushions, rolled up towels, a carer to help you get as comfortable as possible and work creatively with your partner so that pain is reduced. We reckon we have much more variety now compared to when I was more able bodied."
The post is about having sex.
But I agree I don't think I'd have sex with someone I couldn't talk to about it, even if that was really weird at first
"I'm trying to live like a random poem I read that ended 'to bloom where we are planted"
I’m usually ok when I’m horizontal, so that’s a good start. I can still get erections, which is good, but my orgasms have changed and can’t come. A lot of it is due to all the medications I am on I’m sure.
So sex, for me, has changed. It has taken a few years, but I have come to accept that I don’t have to come, to have a fun time. I enjoy the moment, the intimacy, the exploration, and feelings instead.
i know a lot of men wouldn’t admit to not being able to come, but I think it is ok. Don’t worry about it. Enjoy yourself, have fun!
So much pressure is put on sex and relationships, that I wouldn't even know where to start in trying to get one.
Talking about sexuality and being open about it, I believe is the start, and I am so glad you have started the chat x
Callum, you are correct that most healthy men would never admit to being unable to come but for the disabled it's much more common. I had begun to believe that I had lost that ability but recently that has changed somewhat. It is still very difficult for me and even experienced escorts have to work hard at it and get to know me somewhat before it can happen. If I ever should get into a relationship it would probably take lots of discussion for them to make me come. I still did go a couple of years without it and it may simply be that the current position of my spine allows it and I could lose it again at any change. These changes occur currently every 2-3 months.
Colly, the pressure regarding sex and relationships is usually our own on ourselves. Society places an importance on itself and without children society would end so therefore sex and relationships are seen as important to society as a whole. However, it is we ourselves that create the pressure we experience. We feel it is a duty to go the same route as healthy people do when it's not really necessary. We see other people doing it so we say "Why can't we?". Well of course we can, it's just more complicated. Because of the complications the disabled are less experienced generally and with sex and relationships even less so but being inexperienced isn't a bad thing. In fact it means that there is more to find out and more to enjoy.
This is why the discussions and planning can cause issues at times, because they take the fun and the joy out of it if not handled correctly. No matter whether a lady is healthy or disabled I don't want to get bogged down with too many details until the right time. I would not date someone just for sex, I want to date them because I like them and would hope this led to more. Once I am comfortable with someone then I am quite happy to discuss anything that may impact the relationship.
TK
I don't know. I guess I want to show solidarity with all those feeling 'unsexy' and 'unloveable'. Though I do think people are more attractive than they think. It's interesting and helpful reading other people's difficulties as it helps me with my own so thanks guys
"I'm trying to live like a random poem I read that ended 'to bloom where we are planted"
lets grab a taxi,
to a wonderful city,
drink wine and gaze into each others eyes,
eating caviar and pork pies,
then dance the night away in our wheel chairs.
get drunk and fall down the stairs,
love is all we need,
whats that smell? have you pee,d?
no matter we both agreed,
under the moonlight,
that tonight the disability is invisibility,
we live happily, l
long live disability!