Please indulge me with this hypothesis, which came to me while dancing this morning, as I contemplated the fact I have always been hypermobile, all the way back to earliest childhood, but that Ehlers Danlos Syndrome, as a diagnosis, only came much later, at the point when that hypermobility trait flagged itself up as the underlying problem of years of chronic pain issues in adulthood. Since then, as covered in previous posts, I have benefited hugely from starting a daily dance practice (shared about here) which has dramatically strengthened my body but also capitalised on that hypermobility trait. Over that time, I have become so aware of the shared root of my hypermobility trait and my autism, which are well-known to be associated in many people, for reasons that are not well understood “out there”, yet which are innately understood by me.
What if “problem” hypermobile EDS (not unlike the term “autistic” is culturally used, mostly, to determine a neurodiverse “failure to conform” to certain neurotypical standards of behaviour!) only exists in proportion to how much your natural, biology-determining body structures and their preference for expansive movement, or you could say your particularly “form” and its daily need for “flex and flow”, has been denied or suppressed out of you. Similar to how autistic kids are trained to be more neurotypical as “therapy” and even those of us who didn’t attain a diagnosis in childhood were forced to conform to mainstream behaviours to survive school and adulthood.
Dancers and gymnasts a-plenty have hypermobility but not necessarily that EDS labelling, either then or later in life, because they pursue the gifts of their hypermobility and, because its deemed to be of use for their career path, they get to build structure around the traits through diligent use and training. In fact, the whole, usually quite unforgiving, “priority order” of their life is tipped that way, often because certain adults see benefit in bending the normal rules of life to fascilitate their training towards some sort of career aspiration. In other words, the traits are not coached out of them or simply ignored but strengthened as a positive feature that enables them to be good at something unusual.
Which isn’t the case for the vast majority of people with hypermobility, whether that hypermobility is picked up in early life or not. In a paradigm where you don’t live to your natural form, not only do you not use your innate skills but you subserve them to the opposite way of being (a dominantly desk-based life, for example) and you also deny and devalue them. At the first twinge, you take on the viewpoint of mainstream that to stretch too far, to be loose, is “wrong” (very much the stance of a physio I met years ago who filled my daughter and I with cursory tales of not pursuing figure skating, as she was at the time, or things like dance and gymnastics, because both she and I have a “genetic weakness”). Like with our autistic traits, we are assumed (firstly) to be faulty, and then we are coached to be neurotypcical at a very young age, then to lead the neuotypical model of what life should look like, as in a very sedentary or structured way of being (most of our sports are about building muscle not enhancing flow) and very much residing in our heads, pushing for competition not expression.
No wonder as an autistic person I made such an OCD habit of head-based living, to overcompensate for the tidal wave of creative thoughts that lay beneath, often taking the rigidity of thought even further than required out of some sort of over zealous survival impulse; and no wonder many of us apparently have the trait of becoming locked-up in physical and mental rigidity made up of such unshakable habits and routines; because I suspect we find what little portion of the accepted neurotypical way we can cope with, rehearsing it to the nth then making it into our own personal safety blanket, sticking to it like glue!
By the same token, no wonder a body such as mine is forced into a paradigm of rigidity (see my last post for much more exploration of this) but then rebels at a later stage, or maybe even sooner than that, to look like the full range of hypermobility type EDS has suddenly arrived; now, deemed “a health problem”.
I wonder if our bodies sometimes go as far as to recruit chemicals from food or environment to try to fulfil (and protect from) the neurotypical paradigm, hence a tendency to harbour oxalates in body tissues that often runs concurrent with autism and EDS (see my post on oxalates for more on the autism/EDS link; the over-hoarding of oxalates in connective tissue seems to have a devastating effect on its viability). My intuitive theory: the storage of oxalates is primarily a protective mechanism (it is a broadly accepted theory that plants that store oxalates do so to protect themselves; for instance, a study has shown that when the same silver beet plants are grown side by side, some under glass and some not, those exposed to the elements and specifically UV light hoard oxalates whilst the others had much lower levels). So, when we cease living in a self-protection mentality, as in, we work at allowing ourselves to feel supported in our chosen environment, to feel positively received and valued by those around us “just the way we are”, thus able to live our truth as our most authentic selves (all of these are likely to call for making some changes to do with how we live and who we spend time with), also by doing the deep inner work to allay the part of us that worries so much about life and feels so cut-off and separate, I suspect those of us who present with oxalates issues will no longer have such difficulty processing foods that contain them (unfortunately, the trend is to become even more worried, hypervigilent and controlling when you develop a food intolerance, so, around and around it goes). Deeper than that, we need a paradigm where unique traits are valued from birth, expressiveness allowed and freedom to explore natural compunctions encouraged, with openness, acceptance and curiosity. We need those who are diverse in their presentation to feel safe to be who they are but, until then, we can work on cultivating that feeling of safety and (self) acceptance, whilst pursing ways of living that feel most innate to us, in our own lives; or, at least, some of us can and I encourage those who have such freedom of circumstance to embrace it fully.
If we allow and explore the hypermobility trait and coach strength into it at an early age, pursuing a more physically expressive lifestyle, somewhat like dancers and gymnasts do, we might fare better. I am certainly finding my body is growing stronger than ever through dance, but also more fluid, more unexpected, more un-typical in its range of movements and I NEVER got so much pleasure out of its expressive traits… or certainly not since early childhood, before a lifetime’s training into long days sat at a desk in school and office, oh and of course a TV and computer screen lifestyle, all those hours spent in cars as per our cultural norm, took its toll. These days I mix this up as much as is viably possible (no TV in our house, minuscule use of a car and I have no desk!) and the freedom of lifestyle I have worked so hard to attain supports me in that!
Coincidence that I can’t bare to sit at a desk these last few years? I have had to adapt those sort of activities into other sorts of furniture arrangements because that one sitting posture is abhorrent to me in every physical way, it just feels so unnatural and against everything I have learned about myself these last few years of unpicking the landscape of pain I found myself in after all the years of conforming to a type that wasn’t me. My age aside, it feels as though I am rejuvenating, winding backwards to a more flowing format (inside and out) that is my natural default and the effects are starting to compound in the most interesting ways. Rather than see a future ahead filled with arthritic joints and wooden movements, I now smile to imagine the limbered up white-haired woman I will become, sashaying around the garden…because I realised, just in time, that I simply HAD to live to my own type, it had all the answers for my healing!
So, what if the hypermobile body (dropping the term EDS), not unlike the neurodiverse wiring model (dropping “autistic”) is a body ready to evolve into a different sort of life model and a degree of physical expressiveness that has not been part of the old model? In my life, I am allowing myself to explore that and see.