With EDS and HSD Awareness Month upon us, it feels like a fitting time to share one or two posts written from my personal experience of having lived with Ehlers Danlos Syndrome all my life yet not always having known it because other people around me also didn’t have a clue. You could ask, well why weren’t the signs picked up much earlier (it took till I was late forties to even suspect and another more than half decade to get diagnosed) and the reason, pure and simple, is that there simply hasn’t been enough conversation about this whole bundle of symptomatic hypermobility conditions, and how they actually present in real life, to date so that’s exactly what needs to be remedied during this spotlight month of the year.

So to start things off, here’s a quick summary of some of the (now glaring…but not at the time) clues that I had Ehlers Danlos when I was growing up, listed in no particular order really, all of which got overlooked at the time.

Childhood signs of EDS

From a very young age, I liked to sit in the classic EDS “w” posture on the floor doing my drawing for hours or would lie on my front back-bowed the opposite way watching TV while one hand was still clutching a pen doing some creative task off to the side…I could alway seem to do different things with different body parts pointing in all different directions. I always preferred to sit or lie tangled up like a pretzel when I relaxed and often slept in strange contortions with my face buried in the pillow.

My bones cracked and crunched all the time and especially in bed.

Having to sit upright on the floor the way they expected you to sit in certain situations at school, with spine straight upwards and legs crossed in front, was such agony it took all my cognitive efforts to talk down the pain I was in. This led to me having zero concentration, making me seem to be constantly distracted or daydreaming, not to mention fidgeting because of the discomfort I was in, which only drew negative attention to me and led to confusion when the teacher fired a sudden question at me (I came to hate those story times and assemblies).

I was alway double-crossing my legs when I sat in a chair and it really helped me to stay upright (I now also know it helps maintain blood volume as it’s a “POTS” management technique). Teachers were so fond of telling you to uncross your legs in the 70s so wrapping them around twice was a deeply frowned upon unconventionality.

Lying down usually came as such a relief it made me feel immediately sleepy (not alway convenient if it was during a PE lesson, for instance).

I was always asking for junior aspirin for headaches and needing remedies for stomach aches, bloating and gas. My mum put me on adult paracetamols before the advised age because I was so needy of pain relief at different times and I would get up to help myself to my dad’s old fashioned digestive aids in the middle of the night.

I had so many stomach ails that adults mostly stopped taking me seriously. Heavy meals and a culture of having to clear absolutely everything on your plate “or else” would make me feel seriously unwell afterwards and I was the only kid at school to go home for lunch at primary school as I couldn’t tolerate school meals (I took my own food to secondary school).

I had constant “stitch” pains in my side and prolapse type pains from things pressing downwards when I was more active and positioned upright for longer.

If there was an infection going around, I would probably get it…badly. My older siblings joked about me being “the runt” of the family and being “sickly” or a “weakling”.

When I held my pen, the top section of my index finger always bent right back the wrong way. This would cause extreme joint pain during exam season.

I “stimmed” in boring lessons and assemblies by making bundles out of my fingers, contorting them in different directions, wrapping the around each other, bending the tips backwards or pulling my thumb back to my wrist and holding my thumb sideways till it popped out the far side of my closed fist. I also contorted my face in various unusual ways, you could call it “gurning”, usually when concentrating hard (still do…).

I performed tricks with my hypermobile fingers and tongue, did the dead finger in the box trick when my fingers turned blue from lack of circulation and contorted my hypermobile jaw pulling silly faces to entertain my friends.

I never needed anyone to put on my suntan lotion or do up my back-zip dresses as I could throw my own arm very far around my back like it was a fishing line (I still did that arm over-stretch until quite recently, for instance using this fishing line thing to hyperextend my arm joints backwards in order to reach for improbably far-away things off the side table in bed when too fatigued to move myself any closer, until I realised how much it was causing shoulder subluxations and elbow pain, adding to joint issues).

I always got really dizzy and cognitively challenged standing fielding in sports games (which inevitably meant I was rubbish at getting the ball) and my fingers turned blue-white with Reynaud’s in the slightest colder weather so I couldn’t hope to catch a thing, even if my poor coordination ever allowed me to try (it didn’t).

I would hyperventilate and sometimes even become pre-syncope when made to run. Breathing the right way or amount always felt like a conscious challenge and I was self conscious about it for years.

I had zero coordination in gym or athletic classes, to the point teachers belittled and humiliated me in nearly every lesson. My proprioception was generally poor and I was always walking into the sharp corners of desks or tripping over.

Carrying an increasingly heavy school bag became more and more of a source of injuries whilst school friends seemed to have no real issue. We weren’t given a locker until sixth form meaning I struggled to carry everything I needed every day in a bag slung across one shoulder (still more tolerable to me than a rucksack on my back) which caused serious amounts of pain, headaches and more.

Most days, I came home from school utterly exhausted to the core and coiled myself up in the foetal position in an armchair to sleep for an hour or so before I could even think about opening my homework bag or talking to my parents.

In fact I was alway peculiarly exhausted, especially in the evenings after school or first thing in the morning, yawning my head off inspite of having just been in bed. There never seemed to be enough quality sleep to recover. Waking up was always a major adjustment involving cognitive discombobulation, coordination issues, dizziness and a sort of temporal dissonance that is also associated with my autism struggling to adjust from the sleeping to the waking dimensions. My mother had no patience with this and would often yell at me if I overslept, tearing the duvet off my body, which shocked my nervous system into an even worse state of post trauma response that could last hours. It took years and much effort to negotiate a better arrangement and more understanding, an arrangement I’ve had to renegotiate within my current family dynamic to protect the gentle kind of morning transitions I really need to be able to cope.

At weekends and other times without timetables, I would seriously struggle to wake up and it was like I was on catch-up for having total nervous exhaustion at the end of every school term.

I often woke up abruptly in the middle of the night and had physical difficulty getting back to sleep (still my pattern). Patchy sleep and keeping odd hours of activity versus downtime (I’ve been reading my old teenage diaries lately and don’t know how I stayed alive let alone attended school…) defined all of my teen into adulthood years and were, in a large part, adaptations to the vagaries of my hypermobile and neurodivergent brain and body.

I bruise really easily and had so many black and blue bruises of unknown origins on my legs and arms as a child that my parents would probably have been accused of abuse in a different era.

I had various sprains for minor reasons where I had to wear a sling or ankle support at school and people would expect a better excuse for why or think it was an excuse to get out of playing “games”.

When I got cut or badly grazed, it was always a big deal waiting to heal (I can still single out some of these times) plus I very often had minor cuts on my hands, shins and forearms as my skin tends to be fragile in the face of everyday wear and tear. Wearing in new school shoes would take me weeks and sometimes months and involve so much broken skin, even though my parents were sticklers for getting my feet properly measured and buying the best possible shoes.

I went through multiple bouts of plantar fasciitis pain in my feet and could badly pull a muscle in my neck with almost no effort required (still can).

My legs ached so profoundly as soon as I hit puberty that I lack the words to describe, keeping me awake at night. My ability to run around or do sport drained away completely around the same age. My mother was always calling me “an old woman” because of all my aches and pains and the way I would sometimes walk getting up off a chair.

Non specific hip pain and bladder pain also began around the same time as puberty. Regular bouts of interstitial cystitis became a way of life for many decades.

The one thing I still managed to do was cycle which I, for some reason, found preferable and easier than walking as a way of getting around (different joints and weight distribution I’m guessing) until I was well into my 30s.

I had black outs and nose bleeds around the time my periods started and everything got a lot harder physically from then onwards, with distinct “bad” portions of my cycle every month.

There were times when I was in such brain fog around then that I could hardly think straight and felt like I was in a dreamworld.

Hot sunny weather made me feel particularly weird and unwell, like my blood volume had become suddenly deficient. This was difficult at school when you often had no choice where to be and I spent most lunch breaks in a classroom with a couple of friends (teachers would sometimes berate us for not wanting to get more fresh air).

Yet in the heatwave holidays, I actually liked the feeling of lying in the hot sun, sometimes becoming almost catatonic, a self-elected form of shut-down and deep withdrawal, made possible by surrendering to the intense heat. Looking back, I suspect it was like some sort of escapism (who needed drugs) because very few conditions except sun-baked coma ever enabled me to switch off my overactive brain and give myself a rest but then I would struggle to make the right executive decision, once I had had more than enough exposure, to move myself back indoors and would sometimes do skin-damage that makes me grimace now I know the harm I probably did. Remembering this makes me realise there have been other times in my life that I have actively sought, and used, the oblivion of a pre-syncope state to zone out of an overwhelming world!

I had seasonal allergies like nobody else I knew, with extreme symptoms that were more like asthma and strings of goo that I pulled out of my eyes like spaghetti, itchy ears and inflamed airways. Meds only made me feel worse, in fact the same with cold meds, especially decongestants which have alway made me feel really peculiar and have more dysautomias than ever (I have a long history of not getting on with commonly used meds, as is often a trait of EDS). Attempts at camping had to be aborted more than once because I literally couldn’t get my breath where there was close proximity grass, or even in some other places that triggered some sort of environmental allergy (places with stagnant or smelly waterways or poor air quality could also have this effect).

Of course, when did all the life-defining important examinations happen if it wasn’t in the middle of heat and hayfever season! There was a distinct pattern of me being an uber-geek getting my head down to work and doing well in the cooler months then really coming apart when the weather warmed up into the season of dizziness, brain fog and inflammation.

In fact, during the course of brain-storming this blog I realised something momentous about a thing that “went badly wrong” for me as a teen and which changed the whole course of my life. Because art was my thing, I was known as Helen “the artist” by peers and my teacher had really high hopes for me but I then I flunked out, getting my only C grade in art, when it came to taking my O’levels and I never knew why.

Suddenly it hit me: of course, it was a standing exam where all the others were seated and it was in summer (a hot sunny day in the art room, as I recall), exactly the kind of conditions when I get othostatic hypotension from standing because my blood flow becomes gravity challenged when my veins dilate in response to the warmer temperature!

In art lessons, which were only an hour and half long, you got to sit down on a stool, take a break, chat to the person next to you or walk to the supplies cupboard but, under exam conditions, which lasted for a whole morning until lunchtime, standing over a large piece of paper that you couldn’t even reach unless on your feet and with no time to spare, there would have been no breaks, no sit downs, no recovery time suitable for someone hovering towards pre-syncope. I can still remember, like an old nightmare replaying, how it was as though I completely lost focus and clarity as to what it was I was trying to achieve with my painting somewhere during the exam and, once I’d started to make a mess of it, didn’t know how to get it back. I became muddled and panicky, just like I tend to do when I’ve spent a lot of time on my feet these days (the first sign of a hypo “episode” often being when I become flustered and overwrought which means I need to sit down urgently). I knew I had failed before I even left the room but there was no thinking my way out of this problem because I just didn’t feel right cognitively but was locked in the subterranean world of dysautomia (and of course later put it all down to exam nerves, though I was cool as a cucumber in my other – seated – exams). So I spiralled and it changed everything: how I felt about myself, how my teacher and parents regarded me and my so-called “gift” for art and what I planned to do with my life because, until now, I’d intended to go on to do some sort of applied art degree and now I suddenly needed a plan-b.

That C grade led to me dropping out of art as an A-level choice at college , which changed the whole trajectory of my career route until, ironically, my health crashing due to symptoms directly associated with Ehlers Danlos (after almost two decades of feeling like I’d lost my way career-wise) led to me stopping work at age 38 and picking up my paintbrush again, making it my career of sorts ever since. So forgive the long detour on this one anecdote but you can see how unrealised EDS potentially impacted the trajectory of my whole life, where I went to college, who I met and how much satisfaction (or stress) I got out of my so called career path and onwards towards the huge burnout I experienced in my thirties.

Getting back to some other signs and symptoms, I had stretch marks, which I was painfully self-conscious about, by my late teens as is common with EDS but not usual at all in the general population (it’s actually a question in the 2017 diagnostic criteria).

I also had areas of darker or different pigmentation on knees and especially tops of legs from when I was a young child up into early adulthood which made me feel so embarrassed and abnormal, not to mention loathe to wear clothing that showed this off or to be seen without clothes at all.

My stomach and the tops of my legs and arms also had a strangely amorphous quality to the skin and unusual texture (the “unusually softy and velvety” and “stretchy” skin that I now know to be a common Ehlers Danlos trait). My closest friends’s sister made fun of this one day when I was wearing a new sleeveless top that my mum had made and which I was excited to wear, prodding and grabbing at the skin above my elbow like it was bread dough (which I had never especially paid attention to before) making horrible remarks. Of course, I never wanted to wear that lovely new top again and became so self-conscious of this feature that, for years, I actively avoided sleeveless or short sleeved tops and always carried an extra layer to hide them if I did.

My loose jaw connections (the source of years of TMJ pain) meant that, when I relaxed or was concentrating, my “chin” would often protrude out as seen in profile and this was relentlessly made fun of by classmates and even by one of my teachers, who showed the whole class a slide of a photo he’d taken of me on a school trip and called me a Neanderthal, which devastated my teenage confidence. A dentist later told me I was “almost pretty” and should have my jaw shortened and tightened!

I had an extremely overcrowded mouth as a child (another EDS trait), with badly contorted front teeth, and had to have several teeth removed as a teenager. I was the first of my generation to be offered a fixed brace, which turned me into another kind of freak during my teens as this was a very convoluted piece of metal (not like the ones they have today) and had me being likened to “Jaws” out of the Bond film or having the Jaws (the fishy one) theme music hummed at me as I walked around school. This contraption hurt like hell but no one took me seriously when I described the all-over head and neck or even upper back pain that referred out of this device, worn for several months, and my teeth never properly straightened or held their new position, which led to me having them replaced by crowns twenty years later because they were still having such a profound effect on my confidence.

This was when the above mentioned dentist offered to trim a couple of inches off my jaw bone (thankfully, I wasn’t quite vulnerable enough to agree to that as I can only imagine the effect surgery might have had on my TMJ laxity). I’ve since had maxillofacial surgery suggested by yet another dentist that was completely uninformed about the issues of Ehlers Danlos, to supposedly “fix” issues such as looseness and jaw clicking that would likely have been made much worse by surgical intervention, which is why self-knowledge of EDS is so important as you advocate your way through life.

So this was the childhood and teen years, with signs that appear all too obvious to me now but, with no conversation around Ehlers Danlos and no teachers or parents looking out for it, this was very much an experience of falling through the cracks and many wrong conclusions being drawn.

My regulars know that it took until I was nearly 57 to finally get diagnosed with Hypermobile Ehlers Danlos, associated dysautonomias (orthostatic hypotension has now been diagnosed by a cardio consultant) and probably mast cell activation (am finally seeing an allergy consultant for that within the next few weeks). Nobody should have to wait that long before they receive recognition, validation for their symptoms and a proper diagnosis followed by appropriate care and attention from informed specialists.

Ehlers Danlos Awareness Month is all about bringing these conversations to the table and talking about what has been allowed to go unrealised for far too many generations.