Necessary Disclaimers
- This is not written to be about anybody else’s possible experience with Ehlers-Danlos or their play, only my own. I do not cover all our play or all my symptoms, nor do I attempt to reckon with the relative intensity of either.
- This is also not a user’s guide meant to help others play with me—I remain monogamous and this won’t be changing. So why write it? Because though my experience may not echo yours, though you may have more or less or different limitations than I do, my hope is that other people who have EDS or are playing with people who do are inspired to think or talk about something they haven’t. To this end, I’ve added a few quotes from others who shared their considerations with me as I typed this up and invite others with EDS to share in comments.
- I also am writing this because I want you to know that if you have this diagnosis (or any other disability), you don’t have to feel your life is over or that you can’t do the things you used to love. You may have to modify many, you may not be able to do all of them, and this isn’t to say that anger, depression, and grief as a response isn’t valid—simply that adaptation and fulfillment remain possible.
- Though I do some explaining where relevant, I’m not really going to get into what EDS is in great detail—I assume if you’re here you already know or at least are able to Google it—besides to say that there are 13 types, and all have differences. I am speaking from the lens of type III, hEDS. While still classified as rare, this is the most common subtype and what all those I quoted who identified their type named as well. I *will* link you to this, the Beighton score, which will tell you if you are hypermobile. (Hypermobility is not strictly the same as flexibility.) Many are hypermobile to some degree; you can be benignly hypermobile, pain-free, and never experience harm as a result of it. You can also have HSD, hypermobility spectrum disorder, where you do have musculoskeletal involvement and joint/pain damage without the collagen also affecting other bodily systems as in hEDS. Some people with HSD experience more disability than some people with hEDS—both are on spectrums.
Joint Hypermobility Considerations in Play
Rope
It is my aim to be non-prescriptive with the majority of writing, but here is where I will be for a second: it is extremely important that rope bottoms and tops know what hypermobility is and have a sense of how to identify and approach it. I have a theory that—for several reasons—hypermobile people are more drawn to disciplines where hypermobility can be used. Therefore, there is a higher proportion of hypermobile rope bottoms than some would expect. Unfortunately, though hypermobility does not always translate to hyper flexibility, it is commonly exploited when it does.
This was something that was made use of with me often in suspension. I did not feel active pain at the time and did not know it was a problem. I even encouraged it, so I don’t blame my rope top, though I now believe new rope tops do need education on this: in suspension, the influence of gravity + time = passive stretching, and where most people’s bodies would say, “I can no longer sustain this; this is incredibly painful. Take me out now!”, hypermobile ones will not until it’s far too late. They will not offer the same resistance “normal” bodies do that signals they can’t bend further. I would keep deepening into a stretch in a way that could be fine if I were doing it healthily, but I was not. This will eventually dislocate joints. And while I never had any full dislocations that resulted from suspensions, joint damage is also cumulative. I genuinely believe that I would not be disabled in the way I am now if I did not suspend frequently for the first 3 years of my adult life. I still would be eventually, most likely, but I think I sped that process up.
What this means for rope bottoms in general is that you are safest engaging your muscles the entire time you are suspended in flexy positions, and you should seek out rope tops that know this and will encourage this and will not tie you at your usual limit, knowing a position will likely deepen. Disciplines like circus and pole—ones that train you to achieve these positions in the air and using your strength instead of with the influencing factors of relaxation, pushing into the floor, and other elements you might see in yin yoga (as one example)—will help. I believe ShibariStudy has videos with mobility exercises for hypermobile bottoms and I have a post on healthy stretching relevant for everyone but particularly hypermobile bodies, here.
What this means for me is that I do not do rope suspension anymore.
[ADDITION, OCTOBER ’24: You can now hear more about this journey on episode 184 of RopePodcast, available on iTunes, on Spotify, or on SoundCloud! 🎉]
@LovelyDarkness says:
I strongly recommend working on building strength to actively control any hypermobility or extreme ranges of motion you go into. People often gravitate towards bendy poses in rope and the bottom may be sitting in the position completely or somewhat passively. This could be unknowingly putting strain on their already lax tendons and ligaments making them more susceptible to injury. Also, that strength will also benefit your joint stability in any vanilla activities you do. Also, keeping my partner up to date of what joints are currently being problematic and which muscles are strained.
Other kinds of bondage:
I am a twister and a puller. This makes anything where I have a joint strapped into place but the rest of my body can move a problem. Things like Saran Wrap mummification-style bondage? Great! I can’t pull any of my limbs in crazy ways like that at all, and that’s both good for me and bad for me (in the way I like.) Otherwise, I must be careful. If I’m being whipped on a cross at a party, you might see me holding on to attached cuff points–but I will rarely be strapped into them, because I will twist and pull away more than I should and that might lead to a shoulder dislocation. We have a four-point bed bondage system that we play with sometimes which has less risk to me because the gravity influence isn’t there, but my Owner has absolutely has had to remind me to flail less when in it.
@-Gingerr- says:
I like more of a primal type fight for dominance during actual sex as I tend to separate sex & kink. I can’t be in bondage, partial dislocations are common for me and I need to be able to manipulate my joints back into place if they move in a way they shouldn’t. Bondage wouldn’t allow me that freedom, but being physically held down, I can ‘yellow’ fix my joint quickly and get right back to it! Not being able to fix it quickly would cause me pain longer term.
More joint considerations in general:
- Being choked out is one of my favorite activities. My Owner of course always guides me to the ground if we do this and I’m upright, but has to especially watch how I land because my knees will basically bend wherever they decide to. Recently I came to on the kitchen floor and just as soon as I was conscious enough, He pointed out to me that He had been unable to fully keep me from partially W-sitting so that I could correct it ASAP.
- It used to be that when I kissed his boots, He would sometimes put weight on one of my hands with the other foot. It was always gently, but as I’m starting to have more wrist involvement lately and this is my biggest personal risk concern, I don’t know if this will be something that can safely part of our play going forward. We’ll just have to see.
- As a sort of opposite point, needles are one of the types of play I engage more frequently in because they *don’t* involve joint hypermobility considerations. On a day I can’t be swatted around or thrown into a wall, I can still lie still and be a pincushion without needing much mobility at all.
@SweetWhisky says:
While [hypermobility] means I can be folded up and thoroughly fucked, it also means that if I safeword due to needing released from a tie, hold, or position, I need to be released immediately. While my body can do a great many things, if it decides it is done every second increases the pain and inflammation response.
@SassyShrugs says:
As a rule, I have to be careful with rope bondage and rough scenarios as it is easy to cause my shoulder or a knee to pop out and damage me. My right arm can’t handle being bound back/at certain angles and I cannot lay on my right side for any period of time. I have to be very cautious about what ties I allow done that will impact my chest/shoulders. I also cannot run (dislocate) and am hesitant about anything that might impact my knees.
Skin Considerations in Play
- I scar easily and unpredictably; though we used to play often with scalpels (basically my favorite thing) and I have lasting scars from this, my largest is actually from a single-tail whip.
- I also heal slowly. To go back to needles, needle sticks that might not cause giant dime-sized bruises on others may anyway on me. They often last 3-4 weeks, sometimes more. I bruise not as often everywhere with impact because my butt has gone gothmetal, but when I do, it’s often dark and large and near always heals slowly.
- While my skin doesn’t break as easily as some in other varieties of EDS, I definitely have had swings from various impact tools split skin when we didn’t expect them to.
- I see doctors much more frequently than others and sometimes at very little notice. This is something we must think about in combination with the above. I establish kink on every first doctor’s appointment and do not see them again if there’s any discomfort. Yes, I have been turned away from doctors for it.
@808KD says:
I’m also immunosupressed due to inflammatory arthritis. So my skin is fragile and I’m WAY more likely to get infections. But I also love implements like curry combs. So I have a rule that I don’t allow broken skin where I can’t see it. […] Before play I clean all implements very carefully, and I shower with Hibiclens after play.
Sex
Positions:
- Most of my joint issues right now are in my upper body. I don’t have a lot of hip involvement currently, though they clunk a fair amount. Many with EDS use sex swings to reduce hip dislocation by stabilizing plane of motion. We do use props such as stacked pillows to support me, which frankly we did for pleasure long before I started learning about all this.
- SweetWhisky mentions being foldable and fuckable and… yeah. My legs can be thrown back behind my head pretty much at a moment’s notice. This feels amazing and is one of my favorite ways to get fucked, and I know how to engage the appropriate muscles due to contortion lessons, but this falters with *ahem* less focus and it’s possible it does damage.
- The best sex position for me at the moment is being fucked on my side in a kind of a fetal position with my hips elevated on a pillow, with Him kneeling upright next to me. This really allows us to minimize my movements and if I’m having a bad shoulder day, I can decide which side I am on accordingly. Since it keeps my hips together too, it will probably be a great position for us long into the future. It also gives easy access to my tits. (That’s not EDS-related. It’s just fun.)
- The other most frequent with us is doggie style. When I’m in more pain, I actually do this putting a lot of weight on my knees/shins and face in addition to chest and sort of putting my hands on either shoulder in a coffin type position. Again, this minimizes movement. There are days when I can’t find a good position for my neck doing this but am still horny, which brings me to…
- I can kick off sex with blowjobs on my knees for a short while and sometimes can give them with Him lying down and myself on both hands and knees, doing a more push-up type motion than anything else—but for the most part, I end up making too much movement for my unstable neck and shoulders to do either for long. But by far the easiest of any kind of sex for me is—yes, I’m serious—lying down and having my face fucked. On a memory foam contoured pillow, my head doesn’t move much at all doing this, and Him straddling my chest and arms keeps them in place. And I have no gag reflex at all anymore in this position and think it’s hot AF. So yes, yes, it’s true. In my most out-of-commision-but-still-sexy state, my best way of getting sexual connection is having my mouth turned into a passive hole. Lucky me, I’m a broken little thing in other ways and can get off to this the way my Owner does it. YMMV.
@808KD says:
Jaws suck to put back into place. So I prefer to use an open mouth gag for throat fucking. It keeps jaw fatigue to a minimum and I won’t get overzealous and open too wide and dislocate my jaw.
Pelvic organs:
Something worth mentioning is that—by some estimates—more than 50% of all those with a uterus will experience pelvic organ prolapse at some point in their life. Most of this will occur at the very least after childbirth, and often not until menopause. There’s a population likely to have them much younger even when not having ever given birth and if you guessed that’s people with EDS, you’re right! This is actually what led me to my official diagnosis.
I have a kind of prolapse called a cystocele. It’s not visible from the outside and my Owner has said that it’s not something that He can pick up on. It was noticeable enough to me to get it diagnosed, but since that happened, I either stopped feeling it or just got acclimated to it enough that I don’t notice. It won’t get better. I can only try to prevent it getting worse. The use of overlarge toys was never an interest of mine or part of our play, and it probably won’t become one in the future for this reason.
At the appointment where I learned about my cystocele and the EDS connection, I was told that to avoid rectal prolapse, I should not have anal again. This was very sad for me as I was able to come from it, but that’s just how it be sometimes. I’ve had other EDS people say their doctors saw no problem with it, so consult your own professionals. (Update 2024: recently, we’ve had some progress in my disappointment in this in that it turns out hypnosis is very effective on me! I will not be taking further questions at this time. *hides immediately*)
@-Gingerr- says:
EDS & childbirth gives a higher chance for a prolapse (note for education here, there are 4 stages of prolapse and only 2 involve organs outside the body, the other 2 are just a slightly lower placement than ‘normal’ inside the body). My cervix will always sit lower in my pelvis now than it should and no amount of kegels will improve it further than the progress I’ve already made. Part of this is psychological, I like to be filled when I have an orgasm, preventing my cervix from moving further down as my muscles squeeze during an orgasm. If im not filled I worry my cervix will move further down again and cause long term discomfort. Secondly because its always a bit lower, some sexual positions will always hit my cervix no matter the size of dick I’m being penetrated by. I enjoy a little bit of masochism but there’s only so much of a cervix beating I can take so some positions are for minimal time, or not at all.
Birth control
- If and when childbirth is a thing for me, there are a number of potential complications. Luckily, I have the best possible OBGYN for this. Still, because it’s very very important this not be a thing for me til I’m ready, birth control became even more of a priority for me than ever before.
- I was always super sensitive to birth controls and paid hundreds of dollars a month at one time to keep from having to take a kind that turned me into a demon (ACA is not a match for a particularly predatory patent.) My very EDS-knowledgeable OBGYN puts all her patients in this category on the lowest estrogen pill possible. Though YMMV, it is my doctor’s belief that none of her patients with EDS should ever be on a progesterone-only pill (minipill) or use the shot and that we be very careful with the implant or IUDs as we may have a heightened tendency to have them move out of place. I am inclined to take her advice.
- At the time I met her—right after I became aware of my pelvic organ prolapse—I was a few weeks post-taking the morning-after pill. I never want to take that again in my life; it was a nightmare for me, and therefore, my daily pill is even more important and something that would need to be thought about for any multi-day scene. Plan B works by using enough progesterone to make your body think you are already pregnant, therefore preventing a pregnancy from taking. It is possible that the complications I experienced then were a direct result of the hormones already telling my lax body to relax more.
Heart, Vasovagal, and Dysautonomia Response
POTS is not necessarily always part of EDS, but it’s highly comorbid. Being upside-down could cause me to pass out or have some other response in this realm; since suspension is no longer a thing for me, this isn’t such a big category for me these days. However, hydration is a big way I manage these symptoms and is something I prioritize every day and especially on play days and throughout play.
@SweetWhisky says:
My tachycardia is easily triggered, though being horizontal means I almost never pass out. What does happen easily for me is constant adrenal surges and tachycardia. This paves the way for subspace to be a rather easily achieved goal with me. However, this also means that intense sex almost always means recovery to a level like I’ve been having panic attacks. It means intense exhaustion can be a very real thing. I’m also a squirter to a serious level, which can leave me heavily dehydrated. Coupled with the tachycardia and adrenal surges, this can be hell on my body.
@LovelyDarkness adds:
extreme reactions to temp. If its too cold I loose circulation and get a Raynaud’s attack, if its too hot, my extremities swell and I get dizzy. So I need my play environment to be a safe temp. for me. Additionally, with my autonomic system out of wack, it can impact things like being able to orgasm. So, being aware and communicating that is just my body and not a reflection on my enjoyment of sex or my partner’s sex skills.
@sadie writes in-depth about experiences to this end on Fetlife here.
The All-Encompassing “Other”
There are a few other factors I have to think about when it comes to EDS and kink. Big ones right now are
- I have some issues with bladder proprioception (I can’t always tell when I really have to pee, leaving me sitting for an hour or more at a time waiting for it to happen sure that it will any second) and sometimes GERD. I have a comorbid Chiari Malformation which causes migraines. Managing these is a consideration of mine on planned play days especially, to be sure.
- MCAS is another common comorbidity. Since we don’t know what I’ll have an allergic reaction to, I now have epi-pens in my bedroom and my car. At any party we go to in the future, one will come in a playbag.
- Disability makes me more dependent on my Owner’s support, both emotional and financial, and this can affect how people come to the table in terms of consent. We communicate extremely well but I try to self-audit frequently as to how this fact pertains to our communication, especially in light of the sometimes very intense emotional S/m we engage in. (I also fetishize it for that. Hey, we all have our thing(s).)
- The biggest effects on my play are the more general, cumulative ones where the associated pain and fatigue has lessened both how often I can play and how often I can be surprised by it. Though this may have happened organically over time anyway, having fewer days I can play as physically as I’d like absolutely have been aided by us developing major interests in emotional play, as well as other sorts of play like needles. But this can be a cause of depression and even breakdowns for me. I want Him to throw me into walls at random and that’s just not the life I can live anymore. I want Him to not care I’m in severe pain and fuck me anyway. Sometimes He will—to a point. Mostly, He won’t. His risk profile for me is higher than my risk profile for myself. In exchange, I tell Him about all the little changes I may experience, good or bad, so He can make these decisions. That’s why our no-safeword TPE works.
- My Owner also learns about all this and its potential solutions for me alongside me (largely by patiently listening to me read things aloud and ramble), theorizes with me about connections, and attends any relevant appointments He can. This is so important to our being able to play safely.
This all kind of sounds like a lot put like this. It isn’t, in practice. Each element kind of gets added and figured out as you go and you change things and they just become integrated into your life.
I am grateful for this life. It also isn’t the one I wanted. I am grateful for my person. He is the one I always want. I feel like a burden often. He does His best to talk me out of it. Not everyone has someone like this and I know this and value it deeply. I thought I’d have more to say in this paragraph and I don’t. Simply: it just be like that sometimes. We keep going anyway.
I’ve added quotes from people throughout as I could, and invite anyone else to add their info as relevant below if you’d like. If you want to write a full note about this or already have one, let me know and I’ll add the link to the list below. I’ll also add to this as things change over my life. Finally, if you have some other health condition or limitation and want to write a note about how you use it to manage play, please send me a link. One day, time and resources allowing, I intend to make lists for the Risk Evaluation Database allowing people to search by health consideration in addition to by kind of play.
Links from others:
Nath wrote about their experience with their EDS as a top here.
You can find the original Fetlife version of this post, which has some additional thoughts and responses from others in the comments, by clicking here.