A few weeks back, a British youth magazine called The Tab published the story of 19-year-old Darcey Kelly's first experience with penetrative heterosexual sex. Kelly's tale made good copy for them because she has Ehlers-Danlos syndrome. An umbrella name for six discrete but related rare hereditary conditions, EDS occurs once in every 2,500 to 10,000 births. EDS causes defects in collagen, the elastic protein that holds together bodily tissues, meaning most people with the condition have abnormally loose joints and thin and stretchy skin. Depending on the type though this can lead to varying levels of chronic pain, susceptibility to physical damage, or even weak hearts and blood vessels, threatening a drastically reduced lifespan. In Kelly's case, it meant that her joints dislocated easily—as much as 20 times in a day. Ergo when she first tried to have sex, she told The Tab, she heard a loud crack and suddenly found her hip joint had dislocated, sending her hobbling to the bathroom, worried about offending her partner with her pain.
Kelly's story took off in the British tabloids. But while it raised awareness of EDS and the idea that people with disabilities can still be sexual, for many it raised even more questions about how people weigh their carnal desires against pain aversion when they are suffering from EDS or other conditionsthat can cause recurrent discomfort during. To wit, for Kelly dislocating a joint feels like breaking a bone. If your first sexual experience and many thereafter were associated with the sensation of breaking a bone, even if that sensation was common in your life, it'd probably influence how you think about, prepare for, and experience sex.
As it turns out, articles, blogs, and forums for EDS are full of discussions on this point, covering everything from how the condition can change the way a penis feels to ways to mitigate the risk of dislocations using strategically-placed pillows.
As these resources attest, everyone's experience of and reaction to pain and sex is different. Some people just work through it. Some find it drastically reduces their sex drive, or actively choose to reduce the amount of sex they have or to abstain outright. One voice cannot capture this variety of experience. But we still wanted to understand a bit more about how someone with EDS works through his or her relationship to sex, weighing pain and pleasure, from his or her first difficult experience to the establishment of a modus operandi. So VICE reached out to Rebecca Moller, a British woman who runs the blogDystonia and Me and is "fighting dystonia, chronic Lyme disease, and EDS type three." We talked to her about managing her sexual experiences while having her medical conditions.
There are so many varieties of EDS experience. Can you tell us how it manifests for you?
I have type three, so I'm quite hypermobile—I dislocate and slip my joints quite easily. And I have a condition that causes spasms, so they impact each other. For instance, if my jaw goes into spasms, it will dislocate quite quickly and quite easily. Most of my body will do that. [Laughs.]
When did you first realize that might become an issue for your sex life?
When me and my partner at the time stopped having sex [in 2012]. I don't think either of us at the time knew how to handle it. I didn't know how to put my joints back into place. It just became a very painful experience until I learned how to handle it.
You'd been with your partner for a while before that having an active sex life?
Yeah, I'd been with him for two years.
For some people, I understand, EDS manifests in full before they've had their first sexual experience. So from the outset, it's a painful, complicated thing. But you're saying you had the opportunity to develop associations with sex mostly free of that particular discomfort, right? What was it like to realize that sex was getting more painful and complicated?
It'd been getting painful for a few years. I learned how to adapt. If something was hurting, what could you do to prevent that? If I need cushions, if I need to move the position slightly, or if it was as simple as taking painkillers slightly before I'd have sex, [I'd just do that].
Others with EDS have issues with pinching or abrasions. Is that a concern for you as well?
Yeah, my skin tears and bruises really easily. There have been times having sex where I'll wake up the next day and my partner will say to me, "oh I've bruised you, I'm so sorry." Whereas I won't have noticed until they've told me. I'm so used to being covered in bruises.
What precautions can you take against that?
Just talking to them and saying, don't bite hard. If you're going to grip, don't grip too hard. But you can talk about that one to the Earth and back; when you're doing it, you might not remember.
There are some people for whom the pain or inconvenience are significant enough that it just kills their sex drive. What do you think made you so willing to adapt, work through it, and deal with the pain, rather than moving away from sexual encounters instead?
I'm a very stubborn person. Whenever one of my conditions gets to a point where it's impacting, the first thing I think to do is to try to find ways to get around it. I don't like not doing something just because I'm ill. Because of that, I learned how to cope with it. But I can understand the appeal of not doing it if it means you're not in as much pain or you're not going to dislocate.
Beyond pillows and painkillers, how have the rituals you need to go through to prepare for it and the pain you can sometimes experience during it changed your relationship with sex?
Whoever I'm with as my partner, I'm worried how they'll react. If I dislocate, is that going to be a problem or is that OK? I could dislocate my jaw for instance and then put it back and be quite willing to carry on. But for some people, that's too much. It would kill the mood, understandably. I have to talk through things with people much more and say, "you need to be aware that this might happen, but you don't need to worry about it unless I tell you to."
How often do you come across people who, no matter how much you talk it through with them, can't seem to deal with your condition in the context of sex?
Most people I've met can't cope. After me and my first partner split, I was single for three years because people couldn't get their heads around the fact that things had to be slightly different.
I've read one account of someone else who wanted to keep engaging in sex, but for her apparently every time her jaw dislocated, she just about passed out. So that made oral sex very difficult. Is there anything you just can't accommodate?
I have pain-triggered non-epileptic seizures, so... I do [things] knowing that there's a chance that if I dislocate I could end up in a hospital. But at the same time, I've dislocated and not had seizures, so I'd rather see things in a positive light and say, "we may as well give it a go."
Can you tell me more about the precautions and preparations that you do take?
I don't do much. I would never get in a physical position that would make me more likely to dislocate. If I was already having a bad day pain-wise or with spasms, I wouldn't do anything. I have to think things through a lot more than maybe other people would.
There's a lot of bad sex in the world because, quite often, people just don't communicate. You're forced to communicate to mitigate pain and bad results. But do you think there've been any benefits to your sex life by being forced to be more open and expressive?
Definitely! Because you're forced to have that openness, it almost becomes a lot easier to talk about sex in general. You start talking about what you'd like to do and what fantasies you'd like to explore. In a way, the drawbacks that come with the conditions have opened a door.
Do you think it would have been hard for you to develop that same level of communication if you hadn't been forced into it by the physical requirements of your condition?
Most definitely. I used to be quite a shy person. I was quite closed-off. And then since becoming ill, I've just become this open book. I don't see the point in hiding anything about myself.
I don't have EDS or know it nearly as well as you, so there's a lot I probably don't know to ask. Is there anything else you want to say about sex with EDS or disabilities in general?
I just think that people need to be more aware that we're still able to have sex. A lot of people will just presume that you have X, Y, or Z condition and therefore you can't or won't enjoy it.Sex and orgasms are actually... a fantastic natural painkiller in a lot of people. In a way, it's a fantastic natural solution if you've got an illness like EDS that causes chronic pain. As much as we can be fragile, we're not as fragile as people think.
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