Seems I am delving into some of the more difficult subjects lately. While I know what I’m about to approach is an important subject, this is not an easy thing for me to do. As I’ve said in past posts, my whole goal is for people not to feel so alone. Even if it’s only one person that I happen to reach, then I know it’s totally worth me putting it out there. That doesn’t stop it from being personally difficult. A good portion of this is things I’ve not been previously open about, so for those readers that know me personally, I ask for your kindness and your understanding that this is still not a topic I’m comfortable talking about in public settings. What I’m going to be discussing will touch on sexual abuse within a long-term relationship for those of you that are going to be triggered by such topics. I promise, it ends on a good note, but it’s not a topic I wish for anyone to stumble upon without fair warning. I will also be going into other aspects of sex with Ehlers-Danlos so I expect this will be one of the longests posts I’ve written thus far. I apologize in advance and ask that you understand that while I feel it’s important to get this out, this is not something I can re-read several times to edit my draft style ramblings as I normally do.
Something happened to me today, and it brought up a whole ton of emotions and dredged up a whole lot of trauma I mistakenly convinced myself I was over. I should have known better. Not because of any kind of defeatist attitude, but because trauma never leaves us. It is a part of what made us who we are today. Thinking it was done and gone was reckless on my part.
Today started out fantastic. A partner and I were getting intimate, and I was in the middle of performing oral sex when my jaw dislocated and got stuck open.
This is not the first time such a thing has occured. Having EDS impact many of my joints, I’ve often subluxed or dislocated a shoulder, a hip, a rib, and yes…my jaw…because of sex. After a while, I generally just pop said offending joint back in and get back to enjoying the moment. Today played out a bit different as I had a hard time getting my jaw to go back into place. My first instinct was to offer to let him climax in a different way and figured I’d get the blasted thing in later. When he declined, I found myself feeling worse then when I had initially discovered my jaw stubbornly disobeying my orders.
I kept apologizing for screwing it up. And I mean quite literally every other sentence was “I’m so sorry” for several minutes. I felt embarassed, frustrated, disgusted with myself, angry, ashamed. I don’t currently have the proper words to describe just how terrible I felt for the whole situation, just that I was the most unlovable person in the world in that moment.
This whole time, as many times before, he showed me nothing but kindness and compassion. If he did happen to be annoyed or frustrated with me, there was not an inkling of it showing. Though, to be completely honest, there were a lot of times I didn’t look at his face. One part panic of why won’t it go back into place like it normally does and one part mentally devastated that I was interrupting sexual enjoyment with being broken. It doesn’t exactly create the best circumstance to properly observe a person’s body language, ya know? But I’ve never known him to treat me poorly before, it’s not likely that he did so now and I just was too preoccupied to pick it up.
Once my jaw was back in place and I was alone with my thoughts, one thing that kept coming to the surface of my consciousness was that when he declined my secondary offers, I felt worse. What an odd notion. Instead of seeing it as something that was a caring gesture or being upset that I was in significant discomfort…something in my head had decided that him putting himself away somehow only proved I was a major disappointment.
Let me be quite clear before I go on, that this is not a healthy thought. In no way, should this be a thought anyone should entertain as being worth your consideration as valid. When I realized this, I was horrified with myself, but for completely different reasons this time. I’m often a bit of a loud mouth when it comes to equal balance in sexual relationships. So when topics come up about my female friends being expected to perform for their male parteners (I’m aware it happens in any relationship, but that is just where my personal experiences have been) no matter their mental state or pain levels…I’m quick to say that they are not obligated to just be, if you forgive me for being crude, a hole for them to stick their dick into so they can get off. Yet…I was on the edge of putting myself into that category. This was unacceptable. I was also putting my partner into the category of such guys that I’ve railed against when he has always shown every aspect of that not being the way he thinks. This was also unacceptable. So, the only rational thing in my mind, was to dig at it and see if I can find where the root of it was hiding so I could hopefully expose it.
What I found, was both the reason I am so vocal about this particular issue as well as the root of the flood of emotions that assaulted me. Before I was diagnosed with Ehlers-Danlos and before I understood that I deserved better, I was in a very long-term relationship that was abusive. During that time, I still had symptoms of EDS and dislocated shoulders, hips, and jaw. I have a latex allergy and your average condom caused the most painful reaction. With this ex, it didn’t matter what state I was in, it was considered the obligation of the woman in the relationship to provide sexual pleasure. Couple that with a Catholic upbringing where women should obey their male partners that only enforced the statement…and it was a recipe for trouble.
If my hip slipped out, I was still expected to let him get to climax. Sometimes I was able to slip it back in, other times I had to hope he finished quickly. The only way he would allow me to stop oral sex when my jaw dislocated was that if it got locked in a more closed position when it happened. Switching to latex condoms was a form of sneaking in what he considered a punishment when he realized just how bad of a reaction I had to them. It didn’t matter if I was in a high level of pain that day, or just didn’t feel like having sex. It was forced according to what he wanted at that time. It wasn’t always like that, but it was easily half of the time. Honestly, the frequency of it doesn’t matter. The only reason I bring it up now is that it was one of the things I rationalized as being a reason to stay. Because it wasn’t like that all the time. But no matter if it was once a day or once a year. It was sexual abuse. Whether it was the days it was sexual assault or the days it was rape…it was abuse no matter what way you look at it. Once was too often.
Eventually, with the help of two people that are still an important part of my life, I found the strength to leave. I also found the ability to love and trust and have a wonderful relationship of 13+ years. I did a lot of work to discover a whole new way to look at having a sex life that is healthy and enjoyable. So I’m safe and, until things like this come up, happy.
But, as I was so abruptly reminded, being in a safe, healthy, happy relationship, does not erase the scars that abuse has left behind. All I can do, is acknowledge that what I felt and how I acted, is a remnant from that time. An echo. I can become watchful of when it happens again, and discuss it with said partner to gently stop me and remind me that I need to stop listening to the echo of the past and hear what is going on in the present.
This ends up leading into a subject that I’ve seen way too often in Ehlers-Danlos discussions. Please, I know that life with chronic illness presents with a multitude of challenges and sometimes it leaves you feeling like you have to cling to anyone that is willing to stick by you. I hope you can trust by reading what was written above, that I get it. But you are not obligated to perform any kind of sexual act for your partner. I don’t care if they’re a one night stand or a long-term relationship.
Sex is not what we’re often taught to expect. From discussions, so many people expect that if it is done right, all involved must achieve orgasm. Or that there is a window of time that it always must fit inside to be properly intimate. Somewhere along the line, we’ve also gotten this idea that you’re supposed to get so caught up in the moment that any pain from your illness should be drowned out in waves of passion. I both laughed and cringed when we were watching a show on Netflix this evening where sex in the woods happened and the guy had the woman pinned against a tree with very rough bark. Maybe pain is her thing, which is fine, but otherwise? OOOOoowwwwwww!
We zebras have a lot of limitations that are out of our control. For some of us, it’s limited to just our joints trying to escape. For others, it could be a major flux in blood pressure and heart rate due to POTS. It could be embarrassing intestinal upset or your stomach deciding it’s a good idea to release some acid into your esophagus. None of that means you are incapable or unworthy of a happy sexual relationship. It only means you’ve got some work to do to get there. You don’t have to treat it like work though, turn it into a fun journey!
Sex is a wonderful thing that isn’t just about penetration and orgasm. It’s not like that in more normal relationships and it’s certainly not the case when your body stages a coup and refuses to perform normally. Maybe for you, it means oral sex, or manual stimulation. Maybe it means massage and exchanging fantasy stories. Maybe it means finding sex toys that can help compensate for limitations. Whatever it is, you should be able to talk to your partner, or partners, about it so you are all are able to enjoy the moment. Communicate and experiment to find out what will work for you. Even if you’re more into the BDSM scene, a healthy scene is always set with a safe word and a discussion of limitations to make sure everything is safe and consensual at all times.
You are not just an outlet for the sexual desires of another person. You are not made of silicone with a price tag on your forehead, so never allow someone to make you feel like that is your place in a relationship. You are a beautiful individual, regardless of what you experienced in the past, or even the present. It doesn’t matter whether you are sporting a healthy body or a disabled one. You are worthy of love and happiness. You should never be made to feel less than this just because you can’t or don’t want to perform like a porn star. Unless that’s your kink, and then just remember to set a safeword first. 😉
