Ehlers-Danlos syndrome (EDS) and Shibari
- Wacky Otter12
- Mar 2
- 4 min read
Updated: Jul 7
Hello, this is an interesting start to my blog, but I found it fascinating enough to encourage me to start it in the first place!
While I have seen that hyper-mobility is common place amongst those interested in Shibari, I attributed it to those with neurodivergence having a higher likelihood of hyper-mobility associated with it and hence being more likely to have an interest in Shibari. I have previously had some degree of envy for those who could bring their elbows together behind their back, meanwhile with my broad shoulders I struggle to have my wrists behind my back comfortably.
As with every blessing though, it can come with a curse.
My first introduction to EDS syndrome was learning my friend casually had to relocate their shoulder when waking up in the mornings quite frequently. I knew my friend was interested in Shibari, so I concernedly asked them if they were still being tied. They told me that they had to stop due to the amount of chronic pain they were enduring. I learned that it is a very-rare condition that many doctors do not understand that well. It is a kind of condition that can gradually get increasingly worse. It has been hard watching my friend go through this as they never expected their body to be deteriorating at such a young age!
What is EDS?
There are several degrees of EDS, all of which are connective tissue disorder's that affect the bodies collagen. Many people with EDS experience a kind of sensory disconnection from their own bodies, meaning the body’s internal sense of position and movement is dulled and/or delayed pain response. As a result, a rope tie may feel completely comfortable, even while circulation is being cut off, nerves are compressed, or joints are being pushed past safe limits. These sensations may register too late, or not at all, until after the damage has been done.Most often people experience the following symptoms.
Joint hypermobility
Soft, easily bruised skin
Frequent joint dislocations or subluxations
Chronic pain and fatigue
Slow wound healing or fragile blood vessels
Clumsiness
Why is this dangerous in Shibari?
When discussing the risks Ehlers-Danlos Syndrome (EDS) in the context of Shibari, much of the conversation centers on joint instability, fragile skin, or vascular sensitivity. In my opinion though, the most dangerous complication is the diminished ability to accurately feel pressure, discomfort, or injury as it happens. While hyper-mobility enables the body to contort without pain being received, damage to the body is still happening. The sensations associated with nerve compression and joint pain may not be registered until well after damage has been done.
It is particularly heartbreaking to me as so much of Shibari is reliant on the person being tied to know their own bodies limits, and such hyper-mobility might empower people to take greater risks without even knowing what their body is being subjected to due to the syndrome's rarity.
Accommodations for those with EDS
! Do not use this section to push someone with EDS into being tied !
I am not a medical professional, people with EDS should learn about the severity of their condition before trying any of these accommodations. All of which are to be done under your own discretion. You are not alone in having to give up being tied, please remember your mobility is far more important.
Understanding that a body with EDS will likely not communicate discomfort and pain effectively means that safety, consent, and rigging must be rethought. As a whole, suspension on the body itself is an absolute no go. While I understand it is not the same, perhaps a hammock or swing chair might make a fair replacement.
While I know for some people struggling is a great enjoyment, you should keep it to an absolute minimum. This is especially relevant for people whose skin is more fragile. Speaking of fragile skin, wearing any clothing over the places being tied can be incredibly helpful for not damaging the skin. This can look like arm/leg warmers or even just stockings.
The placement of the arms/hands is of particular importance, the safest option is having these limbs secured to the body. This can be arms directly to the side, but most comfortably is a fisherman's harness that puts the hands in a "mummy" position. Securing the wrists and elbows to the chest as a whole is a good option.
I am of the opinion that the ultimate safe accommodation that has been surprisingly missed by many forums though, is simply being tied to a chair. This prevents the ligaments from being over extended.
Finally? Take it incredibly slow.
Why might people with EDS be drawn to Shibari?
Research suggests that people with EDS are more likely to have neurodivergence, but despite that, I still think there is a surprising amount of people with EDS drawn to Shibari! I think a major part of it is the extreme sensations that Shibari can provide, its a kind of stimulation that can be felt, even when the nervous system does not always register touch the conventional way. When people have sensory numbness, its a feeling that can be incredibly grounding. In a body that is unpredictable, rope gives the feeling of intention and planning. Rope offers a containment for the body where it feels like its being held and supported.
This is all theory based off of anecdotes read online from people with EDS. While it paints a somewhat romanticized view, I hope it highlights the danger that desire poses, and hopefully, such a desire can find peace with accomadations.
Notes/References
I am not a medical professional, any further questions should be answered by people with expertise!
What is EDS?
Hyper-mobility self-assessment
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