Yesterday, a very big thing happened to me; after exactly (to the month) 20 years spent bumbling around with an array of bewildering chronic health symptoms, (really a whole lifetime, if I’m being honest with you) I was diagnosed with hEDS (Hypermobile Ehlers Danlos Syndrome)…well, pretty much. I sincerely hope I’m not going to have to eat my words in a few weeks.

I reluctantly add the small hesitation because, although I scored way over the 4 points necessary for my age group (on the Beignton score) in Criterion 1 of the Ehlers Danlos Society assessment sheet and well over the 2 additional factors required from sections A, B and C, including two ticks out of the requisite “must have had at least one” section, a formal verdict won’t occur until the next appointment. Though she was happy to state outloud several times that I clearly meet the criteria, the rheumatologist that I went to see (privately as I didn’t have the heart to start over again with chasing the referral I was so long ago promised) has decided to reserve final judgement until after the echocardiogram she is arranging to rule out mitral valve and aortic root dilation.

I’m really not sure why this is making her hold back since it’s not a deal breaker either way, though either of these things would gain me another point in the scoring system (the irony of almost yearning for these points instead of wishing to avoid them because you are generally just so desperate, by this stage, to receive the validation you are missing for your symptoms doesn’t fail to strike me…). However what’s another 6 weeks in the big scheme of things; it would still just about slip in before my 57th birthday and I more or less promised myself I would get myself some support and some answers before then, after a monumentally lousy health year in 2024!

What astounds me most is that the consultant couldn’t really understand why a diagnostic label was just so important to me. She kept saying that it wouldn’t change anything, didn’t lead to any particular treatment route (except to aim to get stronger, pursue physio and manage pain conservatively since, as she stated flatly, pain meds “don’t work” for hEDS) and that it really “meant nothing” in the grand scheme of things. However, she isn’t the one who has spent 20 years and really much more like 40 falling through the cracks in the medical system, never quite taken seriously in spite of a horrifying array of profoundly life-affecting symptoms which (I now know) are highly consistent with symptomatic hypermobility but which made me otherwise sound like I was over exaggerating things or overstretching credibility (ironic in the circumstances…) whenever I tried to suggest my theory that everything I have going on here is “all connected” and not just a series of isolated weirdnesses.

In light of which theory, the reason an hEDS diagnosis is just so important to me is that symptomatic joint hypermobility, including hEDS and Hypermobility Spectrum Disorder (HSD), involve connective tissue differences that can lead to symptoms in EVERY SYSTEM in the body so its a very big piece (perhaps the only piece I really need) in my lifelong puzzle of many symptoms in many systems!

I have largely stuck to my guns and continued searching for the “lynchpin” unifying factor all this time yet years of sounding like I was over exaggerating or possibly even a serial hypochondriac have not done good things for my morale or self-confidence. Just as so many years of my descriptions of how certain obscure or a-typical symptoms so profoundly affect me on a daily basis being played down or dismissed by various medical professionals just because they are hardly run of the mill. Even the implication that I still don’t quite properly deserve those diagnositic labels that I have been given has been a morale breaker; never considered quite “bad enough” (in their opinion) to be bracketed with the rest. For instance, the consultant that finally confirmed fibromyalgia in 2019 did so with the wry observation that, in spite of this diagnosis I was still, in his opinion, rather more flexible than he would expect to see (being able to bend down and touch my toes) for someone who claimed to have this intensely painful condition as impactfully as I described…an irony that didn’t strike me until I was much more confident in my hypermobility theory a year or so later. In other words, though he had no useful opinion to offer on possible hEDS (I did ask) he pretty much confirmed it with his own observation.

This was tantamount to saying “you have it…but it’s not all that bad” when in fact I had it…but that was only one part of a very complex story, one that also includes significant overlaps with ME/CFS, POTS, MCAS (hEDS doesn’t exclude these other things but makes them even more likely) as well as hEDS itself giving me that surprising bendiness he so blithely observed. In other words, my load was possibly even more burdensome, not less, than some of the other fibromyalgia patients he was used to seeing yet the effect of more than one thing going on at once can be to, as it were, disguise some of its traits and hardships because of symptoms that tug in two often quite paradoxical directions and seem to cancel the effects of each other out.

These kinds of negations of actual lived experience, as picked up along the way of a long chronic health journey, subtle though they may be, can have deep and lasting impact when you have been collecting them across all the many years of your life. Being excluded from the club or only barely gaining entry, as it were, by the skin of your teeth does nothing to improve a lifetime of rejection sensitivity and feeling like there is always a “yeah but” hesitation in your case, nor does this constant lingering “imposter syndrome” help you when you are out there seeking the medical or peer support you really need to get you through life in a better way. Always feeling like I’m not really fully entitled to be in the support groups I tend to join, because I don’t have that piece of paper saying I’m entitled to say I have a certain condition (in other words “it’s just my opinion”) does not strengthen my confidence when trying to relax myself into the kind of pastoral support systems that come from being amongst others sharing a similar lived experience of a condition (I often find myself shying away into the corners of such online communities and groups, stealing away useful information from other people’s conversations as though I’m not really entitled to have access to it or take part, like I am reaching my hand up to take something from the buffet from a cowering position in the shadows beneath the table that everyone else is entitled to gather around). Nor does lack of confidence or sense of entitlement help with self advocacy in situations where to own a condition is to ask very clearly for the supports and adjustments that you absolutely should receive and which you are entitled to in order to make life a little more do-able!

In other words, it is often the “multi” factor to having multiple overlapping things going on that makes you and others question whether you have them in the first place. One thing can seem to contradict another so efficiently that they almost neutralise, at least on the surface of things, which is to belie the harsh reality that you are actually living a life full of constant contradictions and dichotomies, a veritable tug of war of impulses and requirements…no mean feat I can tell you…another prime example that I can think of from personal experience being the fact that I am autistic and ADHD at the same time (a highly contrary state of affairs that I have written about many times).

So yet again, another reason why spotlighting what might otherwise disappear into obscurity, so that you can better identify with it…and thus better identifying your own needs because of having the right lable to apply…is such a crucial milestone, one which I don’t need the consultant to be able to understand in order for her to be prepared to dole it out to me. Access to diagnosis is a right we all have and I need to exercise my right to have one made for me and put on my file so I can use it as a gateway to accessing the kind of further help that I need, going forwards.

As a good friend said to me last night, I don’t need the consultant to understand why that’s so important to me but the fact it clearly is helps to explain why I carried my (almost) diagnosis home with me last night like it was a most treasured gift clutched tightly to my chest…because whilst I agree that it doesn’t really change anything (because it doesn’t make symptoms any worse or better than they already are) it does help me to self-identify more confidently. To quote that good friend again “identifying a condition is part of owning and managing a condition” and, already, I am witnessing myself owning this condition like I am now standing in it with both feet on the ground of it, my arms now within reach of all the most helpful mindsets and resources I need to adopt or have access to in order to manage it better whereas, before, it was always like I had one foot still outside the door and was peering into the room, my view and my reach of everything that might otherwise be helpful to me being slightly out of reach or distorted by the fact I was still straddling the viewpoint of someone without hEDS, as if I wasn’t really sure or committed either way. Rather than keeping options open, this only spread my viewpoints so thinly that, in the end, at a time when I really needed to be resolved on managing my life and my health like a symptomatic hypermobile should, I was still struggling on an almost daily basis to know which way to go with my symptom management and lifestyle choices (more on how crucial those can be a little later).

This shift in me reminds me of the very profound difference I experienced between living as someone who was prepared to consider that they might be neurodivergent in one or more ways, always running that extra train track as well as the equal possibility that I wasn’t, compared to finally accepting and owning the fact and then being fully in the situation of my autism and ADHD. From that point onwards, fully being in the indisputable fact of my neurodivergence made all the difference in the world to my experiences of life because I was no longer trying to distort my concept of what that might look like through the adopted mindsets of a neurotypical person. I had to be fully in the reality of my completely different operating system in order to know how to “do” that much more complicated kind of a life, without clumsiness (you could say “handicap”) anymore, at which point so many answers came to me, as it were, instinctively because they were already inside of me, quite innate to me, but had been buried away somewhere quite deep beneath all the superimposed layers of an entirely different, culturally learned and adopted, perspective of what neurodivergence is and looks like (a perspective that is also, so often, riddled with ableist points of view). Those completely faulty viewpoints were now superfluous to me as the only thing that really mattered, going forwards, was the lived experience of my neurodivergence, not some other, external, point of view of it. Its fair to say that making this important shift, over the last 6 years, has been the most transformative and empowering thing of my life!

So I wonder if something similar will happen…is already happening…with hypermobility now I am allowing myself to wake up in its shoes and own it at last. Because, in a way, there’s is nothing intrinsically “wrong” with hypermobility either, many of its deficits coming from ways in which it is different to the norm and rubs up against all the many ways that leading a typical life or adopting typical ideals about how to move the body through space doesn’t work for the way hypermobile people are built and, yes, a lifetime of trying to be something other than what we are will generally cause many injuries, and underplay many strengths, along the way. Its true, masking hypermobility to myself for decades has been a seriously major blind spot leading to decades of physical awkwardness and low opinions about myself. I realise (now that I start to own it) that, without negating the immense physical challenges and the pain it can lead to, “all” hypermobility really is is a kind of neurodivergence of the body or, you could just as well say, AuDHD is a hypermobile state of the mind. Either way, owning the bigger picture of all the many overlaps between these factors has got to put me in a stronger, not weaker, place from which to navigate my way forwards.

I then wonder if this integration will take place in stages and contain some of the same flag posts as integrating autism and ADHD certainly had. At least I am something of an old hand at recognising the signs and different emotions involved in that process of adjustment now as I have been on the unfolding journey it for well over half a decade!

So, just like when you are first letting the mud of autism or ADHD realisation settle in your world, I am already noticing how my mind is hyperfocusing on all of the areas of “difference” that I have so-long endured as compared to the benchmarks of so-called physical normalcy. How my tolerance, or not, of culturally-favoured movement practices always veered away from the acceptable line or I was held, or held myself, short for not having stamina or for feeling much more fatigued from performing the culturally normative demands that held me in highly unnatural (to me) postures all day long such being seated at a desk, expected to remain upright and in place for hours on end or to take part in sports activities that were the first domain to make me feel like an abject failure in life. The way that even a subtlest shift in the environment has never been my friend because it means recalibrating all the already highly complicated ways that I engage with it, which (being that my body is really not all that well designed to cope with gravity) is no mean feat. All the ways I was allowed to feel a failure or a complainer or a burden on the system for having valid questions relative to my non-normative physique. How sensory differences (because yes, hypermobility makes the entire experience of life one giant sensory difference, like you landed on the planet without your protective spacesuit and oxygen mask) have exhausted me for so many decades that it’s no wonder I’ve been set at a disadvantage compared to those without such differences. How, whilst my brain is often too speedy by far, my body has always been prone to lagging well behind and needing extra repair days, from almost the moment I could stand on two feet…though that was only what was to be expected (if only I had known) given what I was dealing with as the extra experiences of a body out of sorts with its environment. How the potential for complex illness has always been closely hovering there by my shoulder (long before it became so overt) since I was neurocomplex in every way, both inside and out. How striving (so hard) to compensate for these perceived weakness and failures has run me ragged all my life and burned me out more times than I can count.

A period of grieving may yet still be inevitable as I process all this information (though I suspect I have been in that process for some time, since I first came to strongly suspect hEDS was at the core of everything…) and a formal diagnosis may finally close the door on some of the more pointless vacillations that sometimes keep me awake at night, still bouncing between conviction and self-doubt, because there is little to no doubt left.

Its funny that this should happen 20 years to the dot after my first big tumble into the post-viral era that became the non-working, chronically unwell years (though there were other post-viral phases and signs of being systemically unwell long before that). When I think back and ask myself “what did I identify with the most over this last 20 years” the words that most accurately describe the era are “being confused”. Well I would rather identify with hypermobility than confusion as I enter the next 20-year period.

Diagnosis doesn’t take away the pain or the daily symptoms or the vast complications I will be taking with me into the final third of my life but it means I get to target what works and avoid what won’t clearly work; to stick to the right treatments and the protocols that avoid making things much worse (thinking here about how following the standard “pacing” advice so diligently last year, and at other times I have had a long flare-up, has left me more deconditioned than I’ve ever been in my life…which is why I am now injuring myself more or less every time I attempt to do more even a small amount of walking or get myself more active and fit (never in my life have I endured so many hypermobililty-related injuries as I have these last 2 or 3 months!) and now have my work cutout if I am ever going to get fit and strong again without enduring constant setbacks along the way. So I now bitterly regret not more confidently adapting all that standard advice, to do nothing much but rest to get over the post exertion malaise (“you won’t decondition” and “will easily bounce back once you recover your energy” I read), to better fit the hypermobility model, where lack of movement for any length of time is not advised at all, something I would have done if I had been more confident in my diagnosis and less caught up in the mindset that I was “just like” any other person with ME/CFS. This is why I said earlier that diagnosis means hopefully knowing what works best for you and equally knowing what advice to push aside for other people; it means saying thanks but no thanks to helpful and well-meaning approaches that, in your case, would lead to deconditioned stabiliser muscles or over stretched ligaments and joints. And it means getting realistic about what is achievable and what really isn’t given you are never going to get over having this body that is not exactly run of the mill. In fact this understanding is what has brought me to the decision to leave the CFS Health mentorship because, although it has been encouraging and useful in many ways, it is simply not well targeted enough for hypermobile people who happen to have chronic fatigue and all their heavy emphasis on ultimate “recovery” at the end of the process is not very helpful when you are living with a lifelong condition!

Instead I am (already) focusing on much more targeted help for living with my hypermobility. It’s amazing how a month’s worth of prep for this one meeting with the consultant (yes, I prepared…how else was I going to get my hypermobile brain to focus on all the most relevant information that I needed to put across in a 30 minute interview, gathered across all the decades of my life?) has really focused my mind on the overarching pattern of what has been happening with my body all this time and what kind of help I REALLY need, going forwards.

So I am already hooked up with a wonderful hypermobility specialising Occupational Therapist (who knew you could seek advice from an OT even though you no longer have an occupation…I confess, my over literal autistic mind was thrown off by the label for just so many years). She is already helping me with lifestyle management, mobility aids, appropriate pacing for ADHD hypermobile people (me!) and overall mindset (I’m going to be speaking to a solution based psychologist who specialises in chronic pain management, overcoming lack of confidence when asking for help from medical professionals and processing years of medical trauma from feeling gaslit and overlooked). We now have so many irons in the fire that I already know there is life beyond this diagnosis and that the key is to embrace it by looking it straight in the eyes, as I did with neurodivergence, so I can live the experience of it with no more self-masking and minimal confusion, going forwards.

Is it so odd that I feel some considerable relief this morning “just” because I am about to get a label hung around my neck at last? No, I don’t think it is weird at all. Living with complex chronic illness is its own major stressor and then some, onto which the longing to be seen, heard and validated is yet another major stress pilled on the top. You end up feeling utterly exhausted, compromised and wrong footed in every situation that arises, even before you’ve started to tackle it, simply because you feel so horribly undermined by this one shaky aspect forcing you and others to question the very reality you are dealing with. Knowledge, as ever, is power and it can only be a good thing, in my opinion, to get this thing signed off so I can move forwards.

Disclaimer: This blog, it’s content and any material linked to it are presented for autobiographical, general interest and anecdotal purposes only. They are not intended to serve as medical advice, diagnosis, treatment or prescribing. Opinions are my own based on personal experience. Please seek medical advice from a professional if you are experiencing any mental or physical symptoms that concern you.