I am one of those neurodivergents who also has hypermobility issues and you would certainly expect that laxity and instability would be enough to cause extreme fatigue and increased sensitivity and pain all by themselves when provoked by doing too much, yes, but there feels like so much more to it when I crash across every system of my body. It feels like absolute nonsense to pull the sensory and even emotional factors out of the physical response I’ve had to an undeniably tiring and triggering time this week, even though I enjoyed myself, because that only belies, and vastly oversimplifies, the highly complex neurdivergent system that I am operating here!

The thing that has exhausted me is a 2 day city stay being shown around by people we were visiting, meaning we packed a lot in, for all I took care to factor in adequate stops and comfortable accommodation, appropriate food and all the usual safeguards and handrails that I know that I need so well. I then near-enough collapsed the day afterwards, in fact I fell apart with a dysautonomic episode on the final afternoon (thank goodness for the waitress who clocked my distress and swept me into a seat before I fell). I knew that was the end of my weekend, great as it had been, in fact that I had utterly overdone it…because I was wiped!

Then the way I felt yesterday, in the aftermath, was more than just average physical distress; my entire system felt mullered and it was as much as I could do not to sleep the entire day away in a kind of coma, if only I could have found a comfortable position as the degree of rigidity in my muscles was intense, plus every movement elicited a high possibility of misplaced something. My ankle has felt out of place for a couple of days now so I am in full limp, plus other joints are spasmy and quick to displace, I’m having issues with swallowing and eating, small fibre neuropathy is up high and I can’t lie on my side as hypermobility is too amped for my organs to sit comfortably. I’ve been intensely POTsy too, with vasoconstrictive headache and blood pooling when I stand. Am quite sure I’m not alone ,amongst my typical audience, in loathing the costly pay-back for a weekend well spent doing perfectly “ordinary” things!

I can’t help wondering if this is to do with the effect generalised chronic instability has on deep body sensors when you suffer from laxity; those sensors we all have but seldom (unless provoked) pay much attention to but which leave us feeling “off”, “challenged” or “unsafe” when there is a lot of highly stimulating sensory data coming at us from all quarters. Certainly, the more unstable I become the more susceptible I become to to things that overstimulate me…and the more overstimulated I become, the more unstable I become in my physical body; the ultimate catch-22. So walking around a city at Christmas time will certainly do that to me, in spadeloads.

In any city, there’s generally a lot going on around every street corner, day and night. Crowds, traffic, people to be wary of, much heightened EMFs and mobile masts (increasingly including 5G), sirens, shouting and spats in the street or outside the hotel window late at night…Is it all of this that that wrecks me so throughly when I have this kind of all-in physical response to a city weekend?

Otherwise, why do I feel so hammered? Yes we walked a fair bit this weekend but it always feels like more than walking could possibly do to me all by itself when I feel so wiped afterwards, especially given that its not unusual for me to plod-walk a reasonable distance every day, including some hills, otherwise I would quickly become unconditioned. At times like this, its like my nervous system itself has also taken the direct hit, not at the conscious level, where I had a great time, but at some other level that can’t be denied given this absolute wipe-out effect always seems to happen in the aftermath, worsening as I age. It doesn’t affect me so much as it’s actually happening, in fact I generally feel fine while I am in the experience unless it is particularly abhorrent (see below), even pretty thrilled to have a lot going on around me to engage my attention for once, as I do have this need in me for positive stimulation, as I often write about…but it’s afterwards that I take the hit. Like with a lot of things (and I hear this said a lot about neurodiverse reactions to doing “too much” of anything; as in, its often not during, when we could use the heads up, but in the aftermath that we realise too late we overdid it…). Is it poor interoception that causes this rather late-in-the-day feedback that its time to stop?

Or, is it all about tension; have I been holding myself much more tense than usual because of the overstimulation coming at me from all sides and is that what’s wrecked my already overtaxed core muscles, triggering a hypermobility flare-up? I guess they’ve had to do something they don’t generally have to do for so many sustained hours, in addition to holding me upright for longer, which is to brace themselves, all the time, in overworking and overprotective mode (yes even with the use of external body bracing, although I wish I had also worn some support my leg joints). The link between hypermobility and various types of dysautonomia, including but not limited to POTs, is reasonably well established and these kind of effects in the autonomic nervous system (ANS) can lead to amped up sensitivity to all kinds of sensory stimuli, so this is a very credible hypothesis. An onslaught of more than the usual amount of sensory triggers is easily capable of provoking some of these hypermobility-connected symptoms in the ANS, so could this be one of the answers I am looking for?

My endless frustration is that precious few people seem to be joining the dots across spectrum conditions in order to learn more about where these kinds of symptoms come from; and there seems to be no unity of approach as people insist on looking at things from their particular viewpoint or specialty camp. So in this case, although the link between autism and hEDS is well established, and both groups experience sensory processing issues, there have been some rather bizarre differences of focus when it comes to hypothesising what causes the sensory challenges experienced in each case. To quote this article “it’s usually been assumed that sensory issues in autism are due to a centrally-mediated cause (i.e., the brain) rather than peripheral issues. Meanwhile, EDS/HSD is assumed to be peripheral in origin but little attention is paid to the central nervous system (with exceptions of CSF leaks and Chiari malformations) despite it’s associations with autism and ADHD”. Surely, this is a case of massively oversimplifying things as well as refusing to see the bigger picture that must surely include the likelihood that more than one provocation for sensory issues exists…and overlaps…when a person has both things going on. As the same article continues “These spectrum conditions would likely benefit each other by comparison. It’s possible that some of EDS/HSD’s sensory issues are related to or influenced by dysregulation of the central nervous system. Meanwhile, it could behoove us to take a look at the function of the peripheral nervous system in autism and ADHD”.

The kind of wipe-out crash combined with greatly exacerbated hypermbility, sensitivity and pain I have described, above, is much the same as I experience after the kind of social event that makes a lot of demands of me or is anything to do with being around a lot of people for a sustained time (although not so, generally, when I am just the bystander yet detached). This last weekend didn’t feel particularly socially demanding as I was in a small group, in shorter bursts, and entirely comfortable with everyone because, I would say, we were on a neurodivergent wavelength. Here’s, perhaps, another clue pointing at the link between autism and hypermobility; being the way certain social situations, generally around neurotypicals, can seem to take absolutely everything I’ve got!

This is something other people don’t generally understand about me and which I find impossible to even slightly get them to understand by explaining (even though its apparently a common problem for a lot of neurodiverse, highly sensitive or even introverted people) which is that being around people in a very concerted way, when I am expected to be conventionally “sociable”, especially if there is no respite from it, can be the most exhausting thing I ever have to do, equivalent to having any mountain to climb!!

The format said social event takes is therefore extremely important to me, in a way that other people struggle to grasp because, to them, the finer details of where or for how long we meet matters far less than the fact everyone is getting together at all and to them, of course, the longer the better. For instance, I’ve been invited to something that will involve us being in the same very small room with a three other couples for about 8 hours nonstop this coming weekend, and with nowhere I can even step out to for a break, but the host thinks I’ll be fine, my needs well-and-truly covered, because I will be comfortably seated throughout. I suffer from pain and fatigue so being seated all day is perfect for me as far as she sees it, right, since it allows me to just sit back, relax, take the weight off my feet and enjoy the gathering without having to exert myself? I just have to be there…missing the fact that it’s the being there for so long that is the exerting thing. Sustained anything is a tough call when you are wired like me but there is something particularly brutal about sustained social demands when you are autistic, I suspect.

The original plan was to meet somewhere on neutral territory for a meal lasting for just a couple of hours…and I was fine with that because it was finite, I could move around more freely and discreetly and then we would all inevitably leave when the booking was over…but this new plan, better for me in her eyes (though much worse in mine) is where things are now at. Sometimes, you can feel killed by kindness due to this type of misunderstanding. With the best intentions, she and the others don’t get (though I have tried to explain..) that anything social that lasts over 2 or 3 hours without respite completely and utterly exhausts me, in fact wipes the floor with me for days afterwards, especially in my most symptomatic season. I can imagine myself stress-yawning whenever I picture the scenario of all those hours ahead of me as soon as I arrive!

It’s also forcing me to be sedentary in the same space-compromised seat for far too long, with no scope to elevate legs when I’m struggling with being upright, to adjust position or lie down, even move around freely when I just need to pace or discretely shake my limbs out (the need to do this is a commonly overlooked or underplayed factor of neurodiversity). That I would actually have more energy at my disposal to cope if I could only stand up, move around, mix things up more and, above all, slip out to be on my own and reboot once in a while, even take a nap, or cut it short without making a scene about breaking up the party too soon, is not something they can relate to at all. Instead, I will be syphoned of every resource I’ve got after about the third hour and then likely be a car crash the next day. Afterwards I will just need to go mute and be left completely alone to recover myself, far away from other people and all the related demands, social expectations and sensory stimulation, for as long as it takes to bounce myself back whereas I would much prefer not to put myself through it in the first place…but then with Christmas a-coming, there’s only going to be more where that came from!

So is this wiped-out state I get into as much to do with my autism as it is to do with hypermobility, and vice versa? Is this one of the greyed-out crossover areas between the two things and are social challenges and sensory triggers, for instance, as likely to elicit a hypermobility crisis as anything more obvious such as physically overdoing things?

Does my autistic nervous system leave me navigating “normal” sensory and social situations without a sensory shield to filter out whatever is surplus or too much for me to take in, setting off alarms that activate attempts by my body to overcompensate for its vulnerability by tensing and bracing itself in ways that my naturally lax connective tissues can’t cope with or sustain? Does everything I experience come into me too much, too fast and too furious, soaking into my core layers much too deeply and devastatingly, activating my ANS even more, and does instability in my skin, muscles and facia facilitate this even more, like walking around with an inadequate barrier or protective layer to buffer me from what other people are either oblivious to or better able to filter out, even if they do notice it, because their nervous systems aren’t so depleted nor under such constant strain and demand? It certainly feels that way!

If other people are the equivalent to being fully clothed, physically and emotionally, then am I naked and shivering one whenever I attempt to go along with the kind of entirely “normal” situations that are not designed for my kind of nervous system? Is this why I struggle so, because my boundaries are so thin (a phenomenon that Michael Jawer talks about a great deal in his articles)? Am I the thin-skinned one in a world mostly devised by thick-skinned neurotypicals?

For instance, 2 out of 4 places we went for food and drink at the weekend were so abhorrently loud to my sensitive ears, with shouty people and adrenalising nightclubby music, also high ceilings and no sound baffles or softer furnishings to soak the more brittle sounds up, constant hustle and bustle from over-stretched waiting staff and crowds coming and going around our table, also a decor that was anything but calming. However, there seemed to be no other choice but to grin and bear them as this was either where we had pre-booked weeks ago or managed to find a rare table at the last minute; its so often guesswork if you have never been somewhere before. Nobody in our group liked these environments, we all complained to each other or discussed how it could be made better, but choices were extremely limited so close to Christmas in the busy city, it was this or go nowhere. To me, it was so much more than not finding it ideal, a wishful thought for something better…it was torture…yet (as life has taught me to do) I pressed “override” and sucked it up. Those few hours spent where I couldn’t hear myself think let alone other people talking to me, where using my usual “loop” earplugs, designed to just skim off the top decibels of the noise in social situations yet still follow conversation, would have rendered me utterly deaf to the people in my group because they too were having to shout-talk to be heard, really knocked the stuffing out of me!

Dealing with such places was more strenuous than any hill we walked up, any stint of walking too far, being on my feet a tadge too long or stood in the cold for a few too many minutes when I should have been warmer; those things added up, yes, but the sheer exhaustion of sensory overstimulation feels like the main trigger that fired my gun. I’m now crashed this week, unusually so compared to my normal effect after a bit of weekend overexertion (though winter conditions – cold, damp and wind being other major sources of overstimulation – will have made this worse), because the main hit has been taken by my nervous system, which I do believe has a deeper and longer lasting impact, overall, than “just” a physical hit, which then, in turn, switches on a whole other layer of symptoms, including laxity, in the aftermath, which seems to be my system’s way of shouting “STOP”!

For a day now, I’ve been asking myself why am I so wiped, why can’t I even fake a smile or bring myself to speak much at all? Not only have I used up my core strength but my core emotional resources and the only thing that will mend this, from experience, is time.

This is the bit other people never seem to get, because why would they if they don’t ever experience it for themselves…how overdoing it socially (and I mean my version of overdoing it not theirs) can cause a hangover that takes days to recover from. It can draw a line through most of my week as I patiently wait out the tedious part where I can’t even summon the stamina to do the gentler things I usually enjoy; when all my body wants is to doze and to go so completely lax that I can’t argue with it.

It’s like some primal throwback, the response of the hunted animal to the shock of being pursued…I need to play dead for a few days, until my nervous system shakes it all off. In fact, shaking can sometimes really help, as in (if I’ve got the energy) standing up and shaking my muscles out now and again…this, from experience, can really hasten the recovery process if I remember to do it, or at least regain me a bit of respite from the crashing fatigue and pain, at least for short bursts that prevent me from utterly languishing.

The benefits of somatic shaking is something Peter Levant (author of Waking the Tiger) talks about in the context of healing from trauma and, in my experience, it’s extremely useful for coping with these post-exertional malaises that come along with a lot of chronic conditions and having neurodivergence traits…counter-intuitive though it may seem to stand up and make yourself move so vigorously, even for a few moments, when you feel utterly wiped-out or on your last legs (although I would say try it before you dismiss the idea). It’s a telling thing that this should come into my mind now because it draws attention to that word…trauma. I honestly do believe that there is an ongoing traumatising effect, from “ordinary life” and “everyday exposures”, for some of us that have neurdivergent nervous systems, especially as all the years of dealing with this, on top of additional factors that challenge us as we age, mount up.

The best way of approaching this is to recognise the fact that it really is a kind of trauma in the first place. I do believe that constantly drip-fed overstimulation traumatises those of us without appropriate filters and barriers to cope with sensory experiences that are not designed to accommodate neurodivergence and in such a way that compounds with time, affecting us in ways that other people can’t even begin to imagine as they’re simply not having the same experience as us. Quite literally, the only thing we have in common with the majority of people who are apparently dealing with the exact same situations as us is that we’re physically in the same space…because the way we experience that space is a whole other matter. We can try to explain (with varying degrees of success) but we can never take them there with us so they understand!

Until we give this effect the most appropriate name, trauma, we don’t deal with it appropriately either…because we just keep on sucking it up and wondering why we struggle and burn out so often and in so many apparently unusual or creative ways. Yet in the case of any other trauma we would work much harder to notice when it was happening, to put a stop to it and heal from it…but how do you heal from something that is relentless and ongoing, which you have to expose yourself to in order to be part of anything in life that has something to do with being around other people or in the world as it has been made to be, which is highly overstimulating and often too much for our differently wired systems? You would have to become a recluse, and (having tried that) its not something I would recommend or want to perpetuate so the only alternative that I know of is that I have to at least be thoroughly aware of what affects me and then do the very best that I can to mitigate the damaging effects before, during and afterwards.

Prevention is the best cure but once we start to appreciate just how much overstimulation there is around us, in all its various forms (and I’m sure we each have our own weak spots when it comes to particular sensory triggers), and how much these effects take from our reserves or crash our systems in a myriad ways, then we can at least start to better understand what it takes to recover: for instance, the necessary time we need to put aside to reboot, the various trauma approaches we can recruit (shaking, writing, diaphragmatic breathing, self-comforting, listening to or sharing with other neurodivergents who relate so that we don’t feel so odd, all alone or as though we are making it all up), also being ultra kind and comforting to ourselves for as long as it takes and, as far as is possible, avoiding too many repeats of the kind of circumstances that put us through it again too soon.

If we can, re-educating people around us as to what really affects us the most, even if they can’t directly relate, is a positive step though one of the hardest and least rewarding, often most self-defeating, things I have tried as I have found I generally make very little headway when it comes to successfully imparting to people what I most struggle with, without them always assuming I am whining, exaggerating, being antisocial or even a bit hypochondriac or pathetic. So its mostly down to self-awareness, self-care and setting whatever boundaries I can to tend to my own unique needs; this is an intention I reaffirm to myself every time I go through this again, as I am doing now, outloud, to anyone who may find it relatable or helpful.