Exploring the link between hypermobility and neurodiversity

Like the princess and the pea, my hypersensitivity to factors that don’t even seem to register to other people means that the kind of bed that greets me when I check in somewhere new is a make or break situation. “Pretty” metal bed frames that creak and otherwise self-animate whenever you move, especially those with a load of wire springs underneath, under compensated for by over soft or springy mattresses, or, over hard or lumpy ones that push against your shape are the invention of the devil, the very dread of my travels (by the way, does the bed picture in this post make you shudder as it does me?).

The bed in my latest Airbnb turned out to be such a bed…a hard, immutable, immaleable, somewhat uneven surface on top of a creaking metal frame. I can’t sleep in my usual style on such a bed and what I’m forced to do to lie on it doesn’t feel natural, at all. Like an all-too apt metaphor for life itself, it just “is what it is”, completely unsuitable for me, so it’s up to me to flex my body to fit around it, I have no choice. On my side is that I’m hypermobile; like a transformer, I can morph my body shape to fit the alien circumstance. Rather than expect the “thing” to change, it’s always seemed easiest for me to change myself, to fit around it…and I’m not only talking about uncomfortable beds!

So there I lie, utterly distorted, parts of me so pushed out of shape that they remain distorted for hours or even days afterwards (I notice I have far less “bounce back” recovery ability as I get older). Still, I have no choice but to acquiesce to how very unnatural this bed feels as, for the time being, it’s the only one I’ve got for now.

In such a circumstance, my body over…or hyper…compensates. Muscle, fascia, connective tissue of all kinds has to go the extra yard to allow my structures to go slack so that, rag-doll like, I can fit in with the alien surface.

The consequences include much more pain and immobility further down the line but those are just the obvious effects. Subtler ones are trapped nerves, poor blood flow or numbness, disrupted digestion, toxic buildup causing inflammation, arrhythmia and palpitations, chest pain, temperature disregulation, dizziness or nausea, effects that can materialise even many hours after the hypermobile event, all of which can occur as an indirect result of the need to over compensate for the wrong bed (or, for that matter, chair) the night before. In a worst case scenario I’ve been rushed to hospital with a suspected heart attack because of a hypermobility mishap (travel, overdoing it, different bed making symptoms dire) triggering widespread dysautonomia, numb arm and chest pains along with heart arrhythmia and bouts of tachycardia. Yes hypermobility really can lead to all this!

Another thing is, the more times I use the trump card of extreme adaptability to adapt to an uncomfortable circumstance, the less resources I have left in the future, becoming more consequential with age. My days of roughing it or going with the flow sleeping “anywhere” are way behind me!

Here’s another factor of my issues with beds, and it’s clearly related to my neurodiversity: the very fact of being in a new bed, having to adjust to all its differences, learn how it feels against my body in a darkened room, when my senses are particularly amped up, systemically wipes the floor with me, which is why I prefer a familiar bed or at least familiar type of bed (I carry a lot of my own trappings…pillow, bolster, blanket…around when I travel). A need for familiarity is such a crux part of this, one which can make or break my entire nervous system, which is obviously very similar to the baseline of familiar that I require in most other areas of my neurodivergent existence, in order to even begin to cope in day to day situations, so there is obviously a link.

The same profound difficulty with adapting to new situations or what doesn’t feel quite right to me exists, I realise, across the board of my whole neurodivergent experience. I can adapt, in fact am often quite expert at it (hyper-adaptable), having had to convert my ways to “normal” in order to fit in and survive all my life, but that doesn’t mean I’m comfortable with it and, in fact, it’s only getting harder and more systematically draining and damaging to do that with age.

At first, for instance in the flush of youth, I could adapt stealthily, easefully in order to fit in to a myriad of situations. I watched situations closely and I deeply scrutinised “what was” down to the finest details in order to glean what was considered normal and then, without realising this is what I did, I mimicked it and acquiesced to it. Like becoming loose and limpid in my hypermobile joints, I loosened the very structures of my own being, my personal preferences and benchmarks, my more natural modes of operating, and deferred to the ways that other people seemed to conduct their lives, their preferred modes of communicating and conducting relationships, their priorities and standards, their interests and fixations. As to the “wrong” bed, I adapted myself to fit in with what was often either too soft or too hard for me to be comfortable or myself but it seemed to be my only option if I wanted to get through life.

However with the passing years, the consequences of this have also become more dire. Like sleeping in the wrong bed for too many hours, perhaps too many nights on the trot, I have found myself in ever-increasing injury and pain during my attempts to “normalise”. And it’s getting harder to revert back to my shape. This all became a lot worse for me over the last five years whereas, before that, I could adapt to almost anything, perhaps more than most, because I became good at it, in fact so expert I even fooled myself.

It’s like my body doesn’t easily hold its own when exposed to outside influences unless I actively stand up for it and that’s something to be aware of as it’s a risk. One that specifically seems to come along with not realising you are neurodivergent thus assuming you are in the wrong and have to acquiesce with “normal”.

Suddenly, I couldn’t do that any longer, it was no longer sustainable, and that’s when I first noticed my autism and ADHD. With time and acceptance, I realised I no longer wished to shape myself to fit in with all the ways that I am not made to be. It wasn’t comfortable nor was it sustainable. Simultaneously, I found I now lacked the very resources to adapt the way I once had, having reached burnout, so I had no choice but to cease doing it. I no longer had the same bounce-back ability in this area, just the same as the issues with damage caused by lifelong hypermobility were making it harder for me to recover from hyperflexion, thus it was taking me much longer to recover from every attempt to be more normal or typical. I kept trying to continue sleeping in that “bed” of normality but I couldn’t make it comfortable for myself anymore.

When hypermobility makes itself known to you all at once, as it did to me 4 years ago, when you’ve actually had it all along, it first comes out of hiding because it’s overrcompensatory ways are no longer viable or sustainable. Suddenly, you can no longer distort the body, twist and bend it like a pretzel, without expecting consequences nor can you recover so easily. Ironically, those consequences tend to be that you do the very opposite of what you’ve always done to adapt, as in, you stiffen up, become more rigid and locked into limitation and pain. Like worn-out elastic in old underwear you realise you’ve stretched one time too many and now nothing seems to reliably hold up so you rely on constraints to provide some sense of structure.

Likewise, they say autistic people have poor adaptability and are often locked-up in regimes and rigid, routine behaviours but I wonder if that’s because we tend to wear-out our extreme adaptability, an almost chameleon-like ability to morph ourselves to suit the circumstances or whatever sensory information is bombarding us in a zillion invisible ways, even before our day gets started (which is how we attempt to cope with so many unseen triggers and unnatural-to-us circumstances that allistic people can’t even imagine affect us, for instance). When nothing much feels natural to you the requirement to recalibrate, in order to fit in, is very high and that’s what it can feel like in a world that is one giant sensory assault!

Just as we are often assumed to be unempathic when we’re often extremely so, or lacking in feelings when we often feel a surfeit of things that other people seem to be oblivious to, I can’t help thinking this is another area where autism is grossly misunderstood.

Likewise a lifetime of over adapting…masking, camouflaging…will suddenly burn you out to the point you become the very opposite of adaptable, either sooner or later. I seem to have got away with quite a few decades of high adaptability only to reach the end of the line.

One minute you’re as ok as you ever get to be and the next you’ve fallen apart, often quite suddenly, when this happens. Burnout comes swiftly, brutally when you don’t notice the signs, or, how much you have had to overcompensate just to be you on a daily basis. Out of nowhere, all the many acquiescences, the constant overriding of overstimulation and discomfort, because it’s not “normal” to complain, the micro distortions of who you really are, to “fit in”, take their toll and suddenly you’re fresh out of the ability to adapt to any circumstance.

Suddenly life becomes an exercise in control-freakishness, maybe not just for your mental health but for your physical health too. In fact, nothing more alarming than when the very systems of your body, that keep your heart beating, require extreme homeostasis or bust!

When variability tolerance runs out, things get serious and this looks a lot like chronic illness and even cardiac implications. This, from experience, can manifest some starkly real symptoms, as in they are not “all in your head” but will anyone take you seriously if you’re autistic? Since that hospital episode I alluded to, I’m about to find out.

The very fact of constantly having to adapt, to meet alien-feeling situations on their terms, when others just slide into circumstances like a hand into a well-fitting glove, exhausts systemically when we don’t even notice how much we are having to do it, how much we are constantly having to bridge the gap between what is and how we are. This may have been damaging our health for years, as surely as long term smoking or heavy drinking, only we didn’t realise it until it was too late to avoid the consequences to our health. This is why I am passionate about helping other high adapters, women especially, to realise, embrace and advocate for their neurodiversity early on in life. It seems to me, autistic women often have a sort of hypermobility of a more subtle kind; one that enables them to become whatever people expect of them…but at what cost.

Realising your neurodiversity is like finally becoming aware of how the wrong bed affords no real comfort, support or opportunity of recovery, however pretty it looks. Instead, it only adds to your systemic exhaustion. Life itself can be like lying in “the wrong bed” when you’re neurodivergent and don’t realise or do anything to accommodate yourself (even if others don’t acclimate you, standing up for your own differences and needs can be transformative). You never felt very comfortable there and now, as you become more fatigued and frustrated, it’s almost unbearable to be in it anymore so you have to realise this…and, however awkward it seems, change your acceptable criteria for LIFE.

Starting to notice these things that adversely affect you can, of course, lead to an almost obsessive need to preplan situations…just as realising how sitting of sleeping in the wrong position can cause you all sorts of health issues when you are hypermobile may cause you to micro organise your life (I usually thoroughly research the type of furniture they have wherever I’m planning to stay but this time it was rushed due to a family emergency). This inevitably risks earning you labels such as being “over fussy” or a “control freak” but is all part of standing up for yourself.

Minimising how much time I spend in this bed will improve my odds of bouncing back. The same with all of life’s circumstances; knowing about and thus minimising situations in which I can’t be openly, fully myself without masking, adapting, overcompensating, acquiescing yet going against my own comfort requirements, etc. increases my odds of avoiding burnout and enjoying relative wellness for longer; my best autistic life.

This is because I’m now informed and, being so, I’m able to be more resilient, less fragile, more composed in some of the situations I used to flounder in before I realised I was neurodivergent. Like being able to better-plan for the best night’s sleep (though I got it wrong this time) I get to prepare myself better for life…so that I don’t have to fall back on altering myself so much in order to fit in and survive. I don’t just simply push myself through too many “wrong” situations anymore, by placing allistic expectations on myself, and that’s key.

My analogy between the often-comorbid factors of neurodiversity and hypermobility feels useful to express outloud, whether it’s scientifically meaningful or not (though there is a known link between them, nobody seems to know why) because there are just so many parallels. If no more than a metaphor for autistic life, what I notice about my own hypermobility speaks to a lot of the similar issues I have being autistic and it feels worth pointing these out.

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