21 December 2010


Last week I wrote that sex is something I refrain from writing about in this blog. I guess I refrain so I can project the best image of myself to my readers - be it strangers, my parents, friends, colleagues, and most importantly, potential employers. I am conservative about discussing sex in real life too. Though when I blushed (in only the way I can - going white) at someone mentioning the word orgasm, I gladly took part, on several occasions, in risque conversations with my No Limits friends.

Today I am going to take the plunge(ing neckline) and write about sex on this blog, in response to a great opinion piece I read on ABC's Ramp Up.

Lara Irvine wrote a very funny, personal piece, Dating, disclosure and disability, and I can relate to it so much. Here's an excerpt:

Generally though, people have no idea the kind of things I do in the privacy of my own home to keep up the appearance of a 'normal' life. I know that's a luxury a lot of people with disabilities don't have, but it creates a whole new set of problems about disclosure. Is it on the first, second or twenty-seventh date that you tell someone that your digestive system is up shit creek and IV nutrition is what keeps you going?
I also come with all these rules now; like don't stay up too late, be careful what and when I'm fed and never go swimming. A bit like a gremlin but with less eighties haircuts on the supporting cast (unless I'm visiting my aunty Kerry, but that's getting off topic). I'm just getting used to this new lifestyle myself, so how can I foist it on someone else?
'Definitely don't say anything until the third or fourth date,' advised one (fully able-bodied and healthy) friend. 'That kind of stuff would freak anyone out.' Hmm. Thanks for that little ego boost, buddy. So I tried her method, but at the time that meant keeping up the ruse that at 27 years of age, with two university degrees and no apparent impediments, I was unemployed and well-versed in the intricacies of daytime TV by choice. As it turned out, I never got to tell that guy about my illness because we never made it to the third date. I can't blame him - I wouldn't be interested in someone who knows as much about The Circle as I do either.

So keeping quiet til I decide the guy is a keeper doesn't seem to work, but then I'm not sure I want it as the headline in my RSVP profile either. 'Hi, I'm a girl who tires easily and takes Gastro-stop every single day ;) Let's chat!' Obviously that's not going to fly. I don't want potential partners to think of me as the kind of person who uses smiley emoticons, for one thing. Also though, there is a very unglamorous side to life with a digestive disorder... It's not all parking stickers and pension supplements, you know. Even if I do figure out how to tell Dan Sultan about all my issues (because clearly, that's who I intend to date), the reality of it all would turn anyone off. Even someone who loves me as much as Dan is sure to.
I have mentioned similar challenges to Lara's in my Someone will come along one day blog entry and DiVine article. Just as the dating market is tough for people without disabilities, it's tough for people with disabilities and chronic illnesses. It's hard to get past the explanations and questions about my illness. It's difficult to meet someone under the influence of alcohol who is reasonable enough just to accept that this is my appearance and that I will have my illness forever. When there is a pretty blonde with non-scaly skin dancing over there and me, the easier and more attractive option for the man is usually the pretty blonde.

Knowing when to, and how much to disclose about my skin is kind of up there with deciding the best time to first have a poo in a boyfriend's toilet. (I once went three days not doing a poo, but he did see me naked.) I wonder if it's best to tell all, and risk failure of the relationship to thrive, or tell nothing, and let him fumble in the dark to make discoveries (figuratively and literally)?

At dinner last week, there was a discussion about cold sores. I piped up and said that before I kiss a boy I ask him whether he gets cold sores, because if I were to get a cold sore, it could be very detrimental. The people I dined with asked me whether I ask as I lean in for the first kiss, and whether it is a passion killer. Yes and potentially, I answered. I have to ask them before I kiss them. I may end up with a cold sore ridden face, and a blood infection, and at worst case, death (well, from the level of concern my dermatologist shows about me and cold sores, I assume a cold sore may kill me). To date, I haven't had a cold sore, so I also assume the boys I've kissed have told the truth. I don't think it has been a passion killer because I've gone onto kiss them, but I imagine there is potential for future boys to change their mind about kissing me because of that question, and if they do have a cold sore, then I could not kiss them. And when I think about this potential passion killer of a question, what if a cold sore rules out Mr Perfect for me??

To be honest, writing about sex here scares me a little. Like the question about how much to disclose to a potential or new partner, how much do I disclose here? And who can I really talk to? I've talked on TV and radio on topics of sex and dating but have steered toward the dating side of it. But Lara Irvine's article inspired me to write about my experiences on my blog - I've thought about this topic for a while, so here goes...

When I am faced with potential sex, my first thought is not the size of their manhood, but whether I can I trust them to see me in my natural state, skin and all? Will they want to touch me? I don't do one night stands because of the difficulty of disclosure, and need for trust, compassion, acceptance and understanding. Meaningful sex is what I am after.

I have met a number of guys who I could have had sex with but didn't. This annoyed some of them - they saw it as me leading them on. But when they're drunk and horny, I'm sober enough to try to reason and maintain control, and my jeans are being unbuttoned, the chances of me explaining what my skin condition means (at this stage they know it's not sunburn) are nil.

When I was about 23, I met this guy in the city after I saw a band. I was waiting for a taxi, and the one he got out of drove off. He walked with me to find another taxi, and then we got talking, hit it off and had a drink. He was cute and I went back to his hotel room. At his hotel room, I found out he was dead boring and only 18. He kept on asking when I wanted to have sex with him. My reply was 'not yet, we don't know each other well enough'. I ended up leaving after about four hours. Looking back now, I am not sure what I wanted to achieve in going back with him. A few months later, I received a booty call from him, though. I didn't take up his offer.
Footballer Spida Everitt tweeted "Girls!! When will you learn! At 3am when you are blind drunk and you decide to go home with a guy ITS NOT FOR A CUP OF MILO! Allegedly......". For me, I don't want to have sex with someone when I go home with them for the first time. Nor do I want a cup of milo. But there's not really a compromise, is there? Even when no should mean no. Yes, I'll kiss them, and maybe fool around, but there is no way I am getting naked and intimate with someone I've only just met and probably never going to see again. It's not an insecurity of mine - I am happy with my body size and shape, and even comfortable with my skin in most situations, but there is always a fear of mine that when the lighting is no longer flattering he will see my redness, and when he reaches down to stroke my thigh he feels a rough patch of scaly skin and is grossed out. I worry about my skin in their bed (black sheets are awkward), and the way I look in the morning (I once crawled under the covers to the foot of the bed to avoid a boyfriend seeing me looking like Freddy Kruger before I had a shower).
I once set a rule for myself that I won't have sex with anyone unless I love them (and assumingly they love me back). It's not about religion. It's about my own values. I set this rule because of my need for my partner to be compassionate and understanding, and for me to trust them. I have strictly maintained this rule. I think this rule, and my ichthyosis, has meant that I am more prone to heartbreak. And so I've not slept around. Maybe if I was more blase about sex, and had more of it when the chances arose, I'd be emotionally stronger (and better at sex).

When one of my boyfriends dumped me by saying 'didn't I tell you I don't love you anymore?', I was devastated. I was even more devastated when he said that he only had sex with me the previous week because he knew that I loved him so he would get sex. This hurt me for a long time. We no longer speak now, but after our break up, we did speak for a while and he said he still wanted to see me casually. I didn't want this - it was either a relationship or nothing for me. I think I saw him a couple of times, even though he was a douchebag, and looking back, I only returned because I felt like I had the right to use him like he used me. And there was the familiarity factor - he knew my skin, and so I didn't have to explain it all to him again.
A friend observed that I don't seem the type to have casual sex. I agreed. I am not the type. I learnt this fact this year, with the boy I love/d. This brief thing, a several-night-stand-followed-by-friendship, if you like, played with my emotions so much, even though we both knew the outcome was not going to be a relationship. I loved him, I think he loved some things about me, and I trusted him, he was understanding and compassionate towards me - so my rule was satisfied. And because of these traits, the sex was more meaningful than if it had just been a true one night stand with a stranger. I think my reason for sadness was not solely because of him, but because of me. At times I felt like a failure, like I disappointed him. It takes so long to find someone that understood me like he did, and then when a relationship is futile, it's back to the drawing board. What's worse is going from talking to each other every day, then sex, then very little communication. For a while I found it hard to articulate my feelings after things ended with him. While I didn't disclose too much (and still haven't?) to many friends, I felt like so few understood.

For many people, it's ok for them to have sex, end things and move on. Sure there are feelings of hurt and love lost, and also body insecurities, but there's often not the issue of disability or chronic illness to navigate. For me, sex is not just about the risk of pregnancy and sexually transmitted diseases. It's also about the need to find someone I can trust who is accepting, understanding and compassionate. And not afraid to get a little greasy from my vaseline.

PS: not sure whether writing frankly about sex will be a help or hindrance for potential boyfriends...


  1. Awesome, honest and thought-provoking. As usual. But I Reckon this is one of your best blogs Carly.



  2. wow, i admire your openness and honesty.

  3. You are such a talented, courageous and inspirational writer Carly! Love your work! I'm following. Xx

  4. Awesome. I'm so proud of you for publishing this. I love that there is a middle ground between slutsville and Jonas promise rings, and it's not something you need to apologize for whatever your underlying reasons.


  5. So many things to respond to in this post I don’t know where to begin. First of all, THANKYOU for being so honest (as always). And props to Lara Irvine – it really is a fantastic read. Any woman who is dating or anyone looking to date women should read the article!

    For many with a disability or chronic illness, their physical circumstances mean their dating lives will never follow convention. It becomes necessary for many not to approach dating in a purely physical way – and this isn’t necessarily a bad thing.

    Thirdly, there’s no shame in being a casual sex kinda girl – NONE. But there’s no shame in being someone for whom sex & emotions are deeply linked either!!! Chronically ill or not. It just means you need more than a fleeting attraction to feel both satisfied and taken care of. Be proud of that.

    Can I offer a slightly different perspective too. Because my acquired disability, chronic illness does provide one thing for me, right up front, due to the way different people react to it: it identifies the assholes.
    I can tell fairly quickly based on how someone reacts to me, how they treat me, and how they react to me TALKING about my disability, whether or not this is someone I want to hang out with (for friendship or anything else). Further appraisal of their values and character will tell me whether or not they are truly, truly awesome enough to AHEM, conjugate with.

    Last point: anyone who says they only had sex with you because they knew you would put out for love is a person DEFINITELY in the aforementioned asshole category. AVOID.

    sorry for the wordiness Carly :-) it was just one of those provocative posts! Thankyou.

  6. Yes Carly great comments and also everyone else's comments too. It is a minefield out there in the dating world and relationships no matter if you have a disability or not. But I understand about whether and when to divulge information. Like about my chronic fatigue, especially considering that my partner of 12 yrs broke up mainly due to not puting up with it having to be my carer and looking after me so much, when not being able to get to bed etc. So it was very hard to explain about my illness to my current boyfriend -now fiance- I am so lucky that he accepted it all and cares for me despite this. So girls, Carly, everyone, hang in there. Have fun as much as you can - use them before they use you can also help. But above all when its the right one they wont care about any disability or problem you have, if you have one arm or two heads, Believe me.. Good Luck! Leanne Sampson.

    1. Thank you. I needed to hear that.
      I am 61, divorced, with ichthyosis (and other health problems. ). and I often wonder WHO would want to get involved with this awful skin?


  7. P.S Carly... I wouldn't say that the vasaline would necessarily be a turn off either!! ka-shing! :> from Leanne Sampson.

  8. Dear Carly , I am so sorry I have not dropped by to your blog for ages! But I am glad I called in today. This post is so well written and honest, you write beautifully. I really like what Leanne above says, it is a minefield out there, even without a disability - some young men are so immature and mixed up.. and also what Leanne says about having fun! And you are soo right not to hop into bed with guys, so uncool and so much better to make yourself unavailable - if they are really interested in you rather than a quick bonk, they will not be put off that easily!! (that really is something I would tell my younger self!!) Bxx

  9. Frankly, ichthyosis or no, most people are better off being friends before the clothes come off and knowing there is at least genuine affection between one another.

    Knowing you are with someone that you can laugh with helps immensely.

  10. Hi Carly, this post is definitely up there with your best. So well written, and it would have taken bravery to be so honest - I really admire that. Well done and I know a lot of people will learn so much from reading it xo

  11. Thanks Carly for your wonderfully honest writing. I think sharing experiences makes us all better and stronger. Personally, I'm quite comfortable doing casual sex if it's what I feel like at the time and all is up-front with my sexual partner. But I know that's not for everyone. I think it's a shame when people don't go with their own instincts because they are trying to be "normal". There is no "normal" - there is just what is uniquely you.
    As a person with a (sometimes very debilitating) mental illness, I tend to disclose very early on - but then I wonder why anyone would pick me when there are wonderful women out there who aren't crazy! Bugger but it can all be very difficult. But in the end I think it is important to remember that it is okay to be single too.

  12. Thanks for sharing so eloquently on a difficult, personal and underrated topic. Sure, people talk about sex a lot, but very few talk about the personal challenges that they face in finding a partner that suits them. Thanks for giving an insight into something that effects so many people with disabilities xx

  13. Wonderful insight on intimacy and chronic illness/disabilities. When I was dating I often hid my GI condition which was an insult to the man I was dating and to me. I wasn't being honest and was hiding a part of myself that would never change. Timing on when to "tell" is a difficult choice, but I learned to listen to my intuition. I made a lot of mistakes, got hurt a number of times, but had some amazing relationships as well. Wishing you the best in your journey.

  14. I understand your trepidation in wanting to discuss this topic, but feel this is an important one to discuss. Mainly I am sick of the long held stereotype that all people with disabilities/illness are asexual.

    To be frank I am the opposite. I say this not to point out how many partners I have been with (not many) but to highlight the fact that I am more honest and open about this subject than most of my contemporaries. It wasn't until I met Shinx that those close to me began to take the need to express myself sexually seriously. I have thought about writing about cripples and sex for RampUp, but having read your post I feel as if it would be better done in a forum type mechanism or as a series of articles. Perhaps we could approach our boss about this?

    It is only through shared experience that others can truly understand what it is like to confront the complexities of living with a disability/illness. I encourage you to keep discussing these sorts of topics even if they do make you feel uncomfortable.

  15. Great Posts Carly &Laura[Ramp Up].I think the hardest thing is being able to love &accept yourself to point that you are willing let someone love you & your disability.For people with physical disabilities a partner must be accepting that we cannot do whats others can do sexually & make accommodation for that.Sex is scary for me because I have confront my disability and hope others won't be. All my sexual experiences have been from prostitutes because no one finds me attractive.I'm sure sex from a loving relationship is better than a business transaction.Am I wrong for seeing prostitutes? Some people reckon its dirty.Its not ideal but under the circumstances its all I do.Unlike our earlier poster I often feel I was asexual and end believing it for a longtime.I still trying not to believe it!

  16. Carly, you are an amazing person. What a great, honest post. I cried a little bit!

    Just as a side note, when I wake up, I look like Medusa.

    I only met you yesterday and from down the end of the table, I couldn't help but be sucked in by your energy and laughter!

    You are a gem, can't wait to connect more!

  17. The whole sex thing can be difficult no matter who you are and what your life story is. I think you have an amazingly wise head on your shoulder. Give it up only for those who deserve you.

  18. I have to say that I can relate very well to your post. When I was in the dating world, and living with Rheumatoid Arthritis, I found it nearly impossible to meet a guy who wanted to date me. Deformities in my hands and feet and the stiff way in which I often move meant that the beautiful (or even average looking) blonde generally won a guy's interest.

    I ended up meeting my now husband through online dating. I did not post my disability status on my profile, but I did disclose it before our first date. Due to scheduling issues we had spent nearly a month communicating via email and phone. I told him about my arthritis over the phone when it became clear we were going to meet in person. His reaction of asking thoughtful questions told me that he took my health issues seriously while not allowing them to define me.

    By the time we took our relationship into the bedroom, I felt confident that even if the relationship did not work out, I was not going to regret the time and effort we put into it. Four years later, we still have to work on the physical aspects of our relationship in ways many couples don't have a need to. I don't always know what is going to work in terms of sex until we are already in the act, but thankfully hubby rolls with the punches. In many ways it makes our relationship stronger to have to communicate about sex as much as we do. A sense of humor helps tremendously as well. It can also be extremely fun to explore with eachother.

    At any rate, thank you for your post. I feel this topic is so important for people with disabilities of all types to be able to discuss. Dating, relationships and sex all take on added deminsions when you add in the issue of chronic illness.

    I wish you health and good luck in all your endeavors. Namaste :-)

    1. "Dating, relationships and sex all take on added deminsions when you add in the issue of chronic illness. "
      Your comments brought tears to my eyes. I am 61 and don't happen to know anyone else with a disability, OR anyone with compassion FOR people with disabilities. These stories give me hope.


  19. Hi, visitor from Chronic Babe Bloggers here. I love this post, and I appreciate the courage it took you to put it up here. My favorite line is probably, "When I am faced with potential sex, my first thought is not the size of their manhood, but whether I can I trust them to see me in my natural state, skin and all? Will they want to touch me?"

    I am married (have been for four years) to my high school sweetheart. He is a keeper; we actually had one of our first "dates" at the hospital, beside my dialysis machine, watching a rented movie. He has always understood me.

    It might therefore be surprising to mention that I have issues with sex. For you, a concern is your skin condition. For me, it is the treatment for my genetic disease. I am on a medication - the only one that can slow down my terminal illness - that makes the patient smell. OK, maybe this sounds silly in light of the fact that all my organs are shutting down and body odor should be the least of my concerns.

    But this smell - from a drug that must be taken every six hours - seeps out of the pours, the hair follicles, the mouth/breath, even the eyeballs (because I also have to take it in the form of hourly - yes, hourly - eye drops). Despite the fact that my husband loves me with all of his heart and understands that this medication is necessary, I often shy away from sex (and even kissing) with the knowledge that all the remedies I try are only somewhat masking the odor.

    When we were married, my husband knew about the medication - but I was, at that time, being noncompliant with it. I was destroying my body and having some of the best sex of my life. Oh, how I would love to recapture the latter without reliving the former!

    I don't know what I am saying here, except that this post resonates with me. Thank you.

    1. i hope you don't give it up forever . it must be dreadful to choose between death and lving without that loving closennes with another .

    2. have a shower maybe use mouth wash maybe

  20. Great post and writing darling.
    As for sex: I think the number one thing for me that I will try to pass onto my kids, is only sharing that form of intimacy with someone who respects you. Whether that's a one night stand, a fling or something more, you want someone who will treat you beautifully, use protection, and respect your body and your feelings.
    When I look back on my life - because I'm 43 - there are times when I'm so relieved I didn't have sex with some men. But there are other times where I wish I had!
    We're all different, but I definitely only want to have sex with someone who genuinely feels enough to me to treat me as a woman with feelings and not a toy to be discarded afterwards. Oh, and if he's good in bed, that's a bonus!

  21. I love your blogs Carly, you are so positive, and you write so well and have such a good attitude to life! plus i agree with your views on sex, no sex before love

  22. Great work Carly. I feel for you greatly. This is a delicate situation for anyo9ne, let alone your added complication.

    Very thought provoking article.

  23. I am just so glad I happened upon your blog.
    Thank you!


    1. Thank youo much for your comments Jean. They mean so much to me, I wish you all the best for the future. Please keep reading :)

  24. What an honest post. I have only ever slept with one guy and only after we got married. That was my choice. I honestly don't know if I could have ever done one night stands - it just isn't me.
    Wishing you a life filled with happiness and great relationships !
    #Confessions visitor

  25. Hi Carly, I don't have a chronic illness or disability but I thought dating was hard enough let alone what you are all going through. But I agree for everyone it comes down to respect. For yourself and the other person. Thank you for being so honest and brave in sharing this with us.

  26. This is a very thoughtful and honest post. I agree with your points and feel the same. I never gave myself to someone for the hell of it and I've only ever had one serious relationship - with my husband. I agree there should be more to a relationship than just the physical - maybe those 13 years of Catholic education did sink in somehow! Thanks so much for sharing this post as part of I Must Confess this week.

  27. Hi Carly, I'm glad you did share this, and I hope you aren't feeling bad about it now. It always feels like a privilege to read your posts - your words are not wasted.

  28. I'm so glad I read this Carly. It's so beautifully written and there are so many of your rules that I wish I had stuck to when I was single. The part where you were talking about how fragile the several night stand left you is all too familiar.

  29. if i ever meet a woman with slim figure nice rest of her body gentle soft loving persona but a disablity as long as we can share sexual pleasure then thre's the issue of kids


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