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Let's talk about sex... and disability

Sam_ScopeSam_Scope Posts: 7,732Administrator Scope community team

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!

Scope
Senior online community officer

Replies

  • TopladytalksTopladytalks Posts: 5Member Listener
    Sam Scope, I could have written this article, it was exactly my story since becoming disabled. I so identify with the feeling of loss, loss of nearly everything in my life and as you say, the loss of your former sexual life. Rebuilding it has been a difficult challenge but thankfully I have a very understanding partner and we've worked at it together but if it had been someone else, I think our relationship would have collapsed. It's bad enough when your worklife, your social life and your family life suffers due to chronic pain but when your private life suffers too, it feels like there is really nothing left from before and life is very difficult. 
    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.
  • mossycowmossycow Posts: 486Community champion Pioneering
    It's incredible really, how little it is talked about by professionals which implies it's either low priority or not considered an issue. 

    "I'm trying to live like a random poem I read that ended 'to bloom where we are planted"

  • TopkittenTopkitten Posts: 1,003Member Pioneering
    I find it difficult to read all that and relate it to a loving relationship. It appears too planned. I do understand that it is probably necessary for some but it must put a strain on an existing relationship. It is also very difficult to see how it could be applied to a brand new relationship just starting out. I have never met anyone prepared to be that open with a stranger and even myself, being very open, would find it very uncomfortable to go through all that. It would take the romance out of it and in the beginning the romance is everything. Perhaps with two people at similar stage of similar conditions it might be possible but then the choice of people would be even more limiting.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • Sam_ScopeSam_Scope Posts: 7,732Administrator Scope community team
    I think romance is great but if there are physical limitations to certain sexual experiences it would be better to talk about it beforehand rather than having embarrassing expectations that arent going to happen.

    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. 
    Scope
    Senior online community officer
  • TopkittenTopkitten Posts: 1,003Member Pioneering
    I agree that discussions here can help people and can clarify thinking but that doesn't really translate to the one-to-one relationship situation. It's one thing to know what you want to discuss but another to bring the subject up talking to a person you have feelings for.

    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
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • monirmonir Posts: 1Member Listener
    i don't talk about it I want do it 
  • MandyLMandyL Posts: 3Member Listener
    Excellent posting. I have bipolar disorder and am going through menopause. This affects having an intimate sex life. I mostly feel unworthy because of my illness and as the brain is the most powerful sexual organ dealing with my own erratic moods is hard enough. X
  • Sam_ScopeSam_Scope Posts: 7,732Administrator Scope community team
    monir said:
    i don't talk about it I want do it 
    Some people are very private about sex and relationships and that is fine, everyone is different :)
    Scope
    Senior online community officer
  • mossycowmossycow Posts: 486Community champion Pioneering
    "I find it difficult to read all that and relate it to a loving relationship. It appears too planned. I do understand that it is probably necessary for some but it must put a strain on an existing relationship."


    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"

  • callumchilledcallumchilled Posts: 13Member Connected
    I find this post extremely interesting. Sex was and is, a big part of my life, and as a gay man, the demands and expectations can be inaccessibly high. 

    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!
  • CollyoftheWobblesCollyoftheWobbles Posts: 14Member Courageous
    Thank you for talking about this. I am in the position where my disability is stopping me form connecting to other humans, and I miss sex a lot.
    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
  • TopkittenTopkitten Posts: 1,003Member Pioneering
    Mossy, whilst all of the things that healthy people take for granted can be a challenge for us sex is one of the most difficult. Not just because it also involves another person but also because the subject has been taboo to discuss in the past. I also suspect that if people could not do so anonymously most would not discuss it and post here. Another important point to remember is that, unless we plan to use escorts, sex is the culmination of the cementing of a relationship and a natural occurrence of moving beyond a certain point within that relationship. Of course I have known men who live for one night stands and sex with no strings. I am sure there are some women like that also but, for the most part, sex is simply a part of the relationship. It is much easier to manage without sex than it is to manage without a relationship. It is also much more fulfilling to enjoy sex as part of a relationship than as a thing in itself.

    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'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • thespicemanthespiceman Posts: 5,355Community champion Disability Gamechanger
    Hello I find it hard to discuss this issue it is not only because I feel that my disability gets in the way of any relationship.  I find to hard think of sex in a relationship as I consider thinking of my relationships in the past.  People are fascinated about the disabled and sex why I do not understand.  I would like always to get to know the person first then if and when the topic of sex raises in a relationship.  I need to honest and open and most of all comfortable.  I am a private sort of gentleman what goes on behind closed doors is my business.  I had a brief encounter once and she told everyone and do mean everyone.  I am still lonely been out today and meeting people and women from a group I belong to always courteous and polite but it is finding increasing hard to talk to them sometimes.  Am I scared probably of failure and wish I had some times a bit more courage.  I know I am the comedian in the group and I make them laugh but how and when can I if I meet someone the courage to begin again.  
  • brett75brett75 Posts: 8Member Listener
    I feel,  sex as the word state's has built up barriers on my personality. Because when I was younger I first learnt about it outside the girl's toilets. An was shown video's at mate's houses an kept telling myself I don't have to do anything till I get married. But I feel that not waiting or being not seeing myself as everyone else I questioned myself, to why shouldn't I try it if this is the new part of having a relationship then I should throw myself in to it. But it has broken me in two, because I have no care for myself an have put myself throw rooth break ups and been on with cyber/webcam/Porn because of it feeling safe an to scared to go for another relationship. Because of being hurt getting shouted at having my metal state taking over an not being about to cope but being by myself I am closin door's an my trust isn't going to grow an as a person I am scared.
  • thespicemanthespiceman Posts: 5,355Community champion Disability Gamechanger
    Hello I understand where you are coming from.  I had a friend who was like myself and then found the net and I am afraid got hooked on the content of these porn websites.  The problem was he thought all women were like that and this not only effected the relationships he had.  He also lost me as a friend because he got this impression of women on porn websites which was tricky if I met someone and he was there in the picture giving me advice on what to do regarding sex.  I felt he did not know what he was doing and ended up me and him falling out.  I am sorry what happened for ages but I did find out that he was going one step further and paying for sex.  Which got him into debt and I am afraid into poverty.  I am away from that area now and it is a lesson learnt.  I respect the values and virtues of a relationship but they needs to equal share of honesty and openness.  I also believe as I have said before trust and not be deceived is an important factor for me.
  • brett75brett75 Posts: 8Member Listener
    I have had sexual relationship's since a young age an had a bad married that lead me into going onto a safeguard of looking on a site making a friend an sending her money to be my friend. An see her online an even visited her but just for dinner because it was safer then being with someone intermittent or in a real relationship because of there is not fighting no one getting hurt but the draw back is that I am loosing my money my self respect bease so is getting used even tho you think your helping the other person there is no ties, but in a physical relationship which I have had in the past we're I was uses or put into a relationship we're I felt used because I was the doormat an felt even more like a doormat because we let people treat us this way that people do use us an we just think it is the norm. 
  • mossycowmossycow Posts: 486Community champion Pioneering
    edited September 2017
    Yeah I agree, I think disabled people are more vulnerable to all the pitfalls and heartbreak of relationships. I've had some bad luck but I am lucky to have my current relationship who has accepted how I have changed.... But even so, it's so difficult. We argue, we find sex so very difficult which can be very hurtful. But I guess it's like a sunny day in rainy Britain.... When it goes right it feels worth the struggle.

    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"

  • disable_mabledisable_mable Posts: 7Member Listener
    We are humans. not machines. we are lovable and sexy.
    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! 

  • wilkowilko Posts: 1,930Member Disability Gamechanger
    Hi to all, when or if we where able bodied sex was an easy exspearances but as we got get older our sex drive reduces due to busy family life fulfilment of our dreams satisfied with our relationship, when we become disabled  it takes time to adjust to our new capabilities regarding sex. The positions we would enjoy are no longer possible but with a little thought and imagination and thought we can reconnect the loving relationship we once had.
  • BarbiesnemesisBarbiesnemesis Posts: 86Member Pioneering
    I try not to think about sex or relationships any more as it makes my heart break with the loneliness I feel. Thank you for sharing the topic though, as it does really annoy me that some people think disabled people are somehow non-sexual beings from another planet!
  • wilkowilko Posts: 1,930Member Disability Gamechanger
    So many posts about sex normally a taboo Subject, it's not only us the disabled people who want or need a sexual relationship but all those couples who we see day to day. How do they manage it ? Little and large fat and thin and everything in between, we have the need for sexual satisfaction but because of our disability or the medication we take or a combination of the two we have learnt to adapt improvise our love making techniques to overcome our inabilities to the standard positions we may have used before being disabled. So never give up what works for you may not for me so keep loving.
  • MarkmywordsMarkmywords Posts: 400Member Pioneering
    When my disabilities worsened, my wife of over ten years became frustrated with dealing with them. She also became more and more distant until finally she betrayed me then dumped me like used toilet paper. I found out that it had been planned for a long time

    Even if I wasn't so disabled, nothing would make me open up and risk that again.

    When disability comes later in life, many things have to be consigned to the past. Learning to let go of the person you once were might be the only way to stay sane.

    I fully support those who do have options and want to explore them though.
  • lozzer25lozzer25 Posts: 89Member Courageous
    I can't make love to my partner as my legs and body tighten which makes everything go into spasm not one position helps tried them all still the same pain my cerebral palsy has ruined the thing that is supposed to come natural
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