Things you don’t get told about sex when you have an illness or disability


Whilst working and studying in nursing I had to take a departure from some of my racier blogs, in order to uphold a professional front at all times. Recently and devastatingly I have had to leave nursing due to my health. That is a blog for another day. However, it has it’s positives; I can return to sex blogging (hooray).

A few days ago I wrote a Facebook status asking my friends to finish the sentence ‘Things you don’t get told about sex when you have an illness or disability…’ and submit it anonymously to my Tumblr. This blog could not have been written without the contributions and help from my friends. We all have different conditions and challenges, and their insight has been invaluable; so thank you.

Also a shout out to the one person who merely submitted ‘moist’.

I hope that I can write a series of blogs on this very topic, a topic which is grossly misunderstood, and often reacted to with horror, disgust and plain ignorance.

My blog, as well as myself, are straight, gay, lesbian, bi and trans friendly, and ultimately sex is between the two people, because at the end of the day, sex has a lot more to do with the individuals involved rather than the genitals which may be mentioned in this blog.

I also highly recommend the following link to a campaign in the UK about increasing awareness and reducing stigma for sex and disability  http://enhancetheuk.org/enhance/undressing-disability/

With love and light,

Jess xxx

………………………………………………………………………….

I received ‘the talk’ pretty early on, much to my horror at the time. And to be honest, all these years on, I remain in some state of shock, with the odd flashback. There is something about the words ‘sex’ being spoken from your parents mouths which delivers it into the pile of  Extreme Awkward Moments, along with time my brother featured in a documentary on Australian bogans, where he is pictured with his genitalia stuck in a beer can.

bogan brother

But I digress.

However, there is ‘The Sex Talk’ and the ‘Sex when you have a Chronic Illness/disability Talk’. One is perfectly acceptable and encouraged, and the other is treated like the moment when someone’s dog starts humping the leather lounge and you don’t know whether to ignore it or address it.  The latter talk doesn’t seem to actually exist. Sort of like someone posting an instagram selfie without a filter or the Christmas dinner in which there isn’t one relative who manages to offend every living creature that ever existed (such as my Nan finding out my brother starred in a documentary with his dick stuck in a beer can)

As a general blanket rule, society is uncomfortable with the idea that the ‘sick’ and ‘disabled’ are sexual beings, with genitalia that has as many needs and desires as our able bodied counterparts. Those of us with illness and disability are not projected as sexy, sensual or downright horny. We are inspiring, vulnerable and needy at best, and unappealing at worst.

aimee mullins
Aimee Mullins- Athlete, model, L’oreal spokesperson

I’m not sure that anyone in the media has actually ever met someone with illness or disability. The majority of my friends just happen to have illness or disability in some form, with a varying degree of physical limitations. And they just so happen to have the most active sex lives out of anyone I know

Research has consistently demonstrated that adolescents living with chronic illness or disability have increased rates of engaging in risky sexual activity and higher rates of contracting sexually transmitted infection. There are a multitude of factors contributing to this; a desire to achieve ‘normality’, a consequence of realising your mortality at a devastatingly young age and a culture of sexual taboo and ignorance for those with illness and disability.

Sure, young people are taught the basics of sex. Object A goes into or against Object B, and the first time will be the most disappointing 8 seconds of your life (and that’s if you are lucky).

But this is where the education ends, and my blog really begins.

It’s not always easy

enhance the uk

Enhance the UK Campaign

“Having sex with an illness is different to anyone would even imagine. I’ve had sex with both guys and girls. Your energy levels are highly affected. Plus the emotions at times. It’s even hard to sustain a relationship through it all. I’ve had a relationship where the person and I were having sex and then afterwards they were so upset because they were scared I was going to die. Though sex can make you feel close to someone and makes you feel safe. Like your normal for once in your life”- Anonymous one

When you have a chronic condition, you often experience an array of physical symptoms that don’t magically disappear just because someone happens to have a boner. Few people feel like being intimate when they have gastro, the flu or a migraine. But for some of us, we constantly feel like this. It doesn’t mean we don’t want sex; in fact, our physical distress often intensifies our need to feel something good. We want that emotional and physical connection more than anyone. But it’s not easy. We have to navigate the bad sort of breathlessness, chronic pain, nausea, dizziness, seizures and infection…and that’s all before the lube comes out.

It doesn’t mean it’s impossible though, and like most things, we manage to find ways around it. Literotica throughout the day prior to the event, a hot bath or even sexting can create an anticipation which is able to ‘overcum’ the physical distress.

And while it may take a few different tries, when you finally manage it, you appreciate it a lot more than any old quick shag.


It can make you sick.

hospital love

“Sex is all fun and games until you go in tachcardia and almost have to go to hopsital, Imagine the nurses faces when they ask what you were doing prior to the tachy and you have to reply with.. Getting my brains screwed out.”- Anonymous two

When you have a Chronic Illness or disability, no part of your life or body is sacred, and that too applies to your sex life. At every scan, every infusion you are asked ‘Is there any chance you could be pregnant?’. Last time I was asked this I just laughed hysterically until the radiographer was too embarrassed to press for further details. And sometimes sex can make you really sick.

Sex is a little bit like running an awesome sprint race, or an extended marathon, depending on whatever floats your boat. As a general rule, when you have a Chronic Illness you don’t really run many marathons. Or sprints. The extent of our physical peak is often running a hot bath of Epsom salts. Our bodies aren’t typically designed to play with the rubber ducky.

You might vomit. You might seize. You might become tachycardic. You might be in pain.  You might even crack your hip so loudly that he loses his boner (Trust me, it can happen).  As with everything in life when you have a chronic illness or disability, it’s about finding the balance. Everything has consequences. You can have an amazing orgasm, but you may also spend the rest of the night on Endone for pain.

Ultimately however, we should never guilt ourselves, or allow anyone else to guilt trip us, into suffering a consequence that is unacceptable to us. I have spent many a night or day feeling wracked with guilt that I felt too unwell to ask him to ‘fish in my pond’. Sometimes the guilt was as a result of my partner at the time, but more often than not the guilt came from myself, and the unrealistic expectations that I held about what ‘everyone else was doing’.

At the end of the day? If it’s worth the consequence, go for it. If not, maybe put on a solo show for your partner or write an IOU. And if they don’t understand, they don’t deserve to have the pleasure of your pleasure.

sex blog awkward position

An awkward position.

“Sometimes sex the ‘normal’ ‘missionary’ just doesn’t work! Especially if your legs don’t move in certain ways!! Haha”- Anonymous three 

Thankfully, the Kama Sutra was written long before the A-Z on Chronic Illness and Disability, and we should all probably take a moment to thank these ancient people for their ‘stroke’ of genius. Often when people hear that my condition causes rather extreme flexibility I get a few nudges and winks. However, just because your body can do something, it doesn’t mean it should. And on the other hand (or ball, whatever), your body may not be able to move in a way that others can. It’s all about what finding works for you and your partner. You can now download free kama sutra apps on your phone, complete with check lists and a passcode on them. But most of all, it’s about having the courage to say ‘Nah this isn’t working for me, how about we try this?’.

These physical challenges aren’t just provided by our bodies, but often the medical equipment which we rely on. This can include but is not limited to oxygen masks, feeding tubes, prosthetic limbs and drains.

sex medical equpiment

“I have an ileostomy. Having sex was difficult because you have to be careful which lay you way and which way you bend. you can knock the bag off. Also, have the guy lay on top of you, is a very hard thing to do. You never know if the clip will come off the bag either. It really is a “messy” situation. It’s extremely hard to find a good position.”- Anonymous four

Some people express feeling ashamed of their medical equipment or embarrassed, others are indifferent and view it simply as an extension of themselves. But just as you may have to experiment with different positions for physical mobility challenges, you may also have to experiment with positions which accommodate for your medical equipment. Ultimately it’s going to be trial and error; The solution may not ‘come’ over night, and at times it may be frustrating or down right painful. But perseverance is key, and you may even have a little fun along the way.

Sex when you have an illness or disability can be more challenging than if you were to be ‘able bodied’. But with increased education, awareness and the knowledge that we have a right to enjoy a fulfilling and satisfying sex life, we can find that, like so many other things, we have the ability to find a way around it, and have a lot of fun along the way.

 And hopefully not get our dicks stuck in a beer can.

One thought on “Things you don’t get told about sex when you have an illness or disability

  1. a very comprehensive blog post! apologies for inwardly giggling but it’s the use of slang terminology to do with sex that had me laughing blindness is only a minor issue in the way of disability or as I like to call it inconvenience. when sex and relationships are discussed with regard to disability it’s often other disabilities that are referred to. I.E. intellectual and learning disabilities such as autism downs syndrome to physical disabilities such as being in a wheelchair or if somebody’s got taxic movements or has had a stroke. I’m somewhat of an ignoramus when it comes to sex and the facts of life only because I’m too embarrassed to even discuss it. when I heard a councillor use the terminology “cracking a fat” I thought I don’t really want to be talking to a male councillor and I don’t really want to be talking to my father about this either and if ever I talk about this it’s with professional supervision and if I don’t know what you mean by saying to ask somebody to fish in your pond so to speak which I’m not going to do in case such a question you find repulsive unless it’s for me to just know the meaning and that’s it somebody once came to TAFE when I was studying and talked about friendships relationships and the like and it was all to do with disability and not once was blindness mentioned as for us touch is a major issue and consent must be given at all times but sometimes I myself feel that women are only consenting so as not to hurt my feelings as it’s never always jenuin but just thought I’d comment here

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