So this is the BIG news I was anticipating in my last post…and perhaps it was appropriate that it was on International Women’s Day, 20 years to the dot since I first became so severely unwell and in such constant pain that I was forced to give up work to try and make sense of my rapidly disintegrating health, that I finally received my diagnosis of Hypermobile Ehlers Danlos Syndrome in writing from the consultant. I hadn’t really been expecting it yet as, so far, I had only been told this verbally and more tests were scheduled so the consultant left it that we would discuss again at the next appointment, therefore the letter came as a complete surprise (perhaps that was for the best based on the way my emotions exploded into such strong reaction when I read it and almost collapsed to the floor with relief). Some 40 years after I first started experiencing seriously perplexing physical symptoms and shortfalls (which, back then, I tended to try and “normalise”, ignore or even blame myself for) and after two decades of various labels being applied to groups of symptoms, including “fibromyalgia”, “ME-CFS”. “POTS” and “MCAS” (all of which still apply since they are all commonly co-occurring conditions with hEDS), I have finally received the validation I have been chasing since I first began to suspect hEDS 6 years ago

Its a diagnosis that is notoriously difficult to get confirmed (and I realise just so many of you are still out there bobbing around alone in its unchartered seas and without so much as a buoyancy aid to hang on to most of the time…I see you and feel you!) due to lack of training and information sharing between medical professionals and sheer bloody-minded dismissal of women who present with a myriad of multi-systemic symptoms all at once, especially around “a certain time in their lives”. I also think that a big part of the issue is that (a lot like neurodivergence) nobody has had any idea, until now, just how many people (a majority of them women) are actually affected by undiagnosed symptomatic hypermobility so its only at this point that the sheer number is starting to become slowly apparent though these kinds of conversations.

Because hEDS isn’t all about painful hypermobile joints or stretchy ligaments…it affects every single connective tissue in the body, from your blood vessels to your stomach lining, your fascia to your organs, your bladder to your eyes and ears, in fact there’s likely not a single part of the body immune from being affected by having “tissue insufficiency” so no, you’re not going mad or turning into a hypochondriac…you’re having to stick your fingers into a zillion leaky holes in the dam, all at once!

And when you perhaps seem to be a bit “too much” with your long list of diverse symptoms, perhaps you come across as quite intense in your medical appointments (possibly not helped by differences in communication style when you are also neurodivergent), or you have too many opinions about your own possible health diagnoses because of all the research you’ve done (being left to fend for yourself will do that to a person…) or you turn up with a long shopping-list of ails to address all at once…not because you’re a hypochondriac but because you’ve become so avoidant of attending medical appointments, due to the demeaning, belittling attitudes that so often confront you there, that you save them up to tackle all in one go, there is probably a higher chance of things going badly in those appointments, with the outcomes you so desperately need being even more elusive for you, the complex condition person, than for the next average person.

For instance, I requested appropriate referrals to do with POTS, neuropathy and worsening joint pain from my GP way back in 2021 (a conversation which felt awkward in the extreme as I could tell she thought I was a bit “extra”) but they were never progressed, not even a note made of our conversation in my records as it turns out! Then covid at the start of last year led to the worst flare-up of my life, along with such severe POTS and fatigue that I was left with too much knee-buckling weakness and low blood pressure to leave my house for almost two months, with a very long haul to get somewhat back on my feet ever since. After that, I became utterly determined to seek the recognition and help I deserve (of course, I was forced to pay for the various consultants and health professionals myself or go right back to the end of that 2021 queue…) and there’s since been a long stream of appointments, tests and self-advocacy over the past 3 months to get to this so its been quite the marathon and pretty darned exhausting and expensive but ultimately worth it.

So, finally I have it confirmed in writing by a consultant rheumatologist, who made it abundantly clear through the details in her letter to my GP that I am more than deserving of the diagnosis after her thorough assessment against the 2017 hEDS criteria. She is, as I mentioned last time, still sending me for an ecocardiogram and blood tests for the sake of thoroughness but these won’t alter the diagnostic outcome and she has written her letter anyway. It feels like a passport to finally being taken seriously!

So now comes the catharsis and yes, actually, the joy at finally being recognised as symptomatically hypermobile, which has almost been too much to digest since the letter dropped on the mat on saturday, since which I have had such a fire burning in my cheeks that I look like I fell asleep on a sunbed so I can only imagine the impact on my nervous system. The relief is tremendous as all those years of inhabiting a grey area dissolve away. Because, although hEDS is no “joyful” condition to live with and only gets much harder as you age, accelerating at quite the pace these last few years for me since menopause (my body is in quite a different state to how it was just 2 or 3 years ago and it now takes multiple braces and supports for me to even step outside the house plus knee braces most of the time I am awake!), I can now hope to cobble together the team of helpers and adaptations I need to make life more manageable for both me and for my husband, who is my ever-present carer and shoulder to lean on and, frankly, deserves a medal for riding shotgun with me all these years (my health problems were really hotting up the year we first met).

Since the start of the year, I have already cobbled together some of that team, including a hypermobile-friendly occupational therapist, a myofascial therapist, a physiotherapist (yet to be met in person…so there could be some adjustments as I work out if she is familiar with hypermobility or has to be replaced, having had quite enough of experiencing physios that don’t have this experience and the tremendous damage they can do…) plus a psychologist to help with pain management. At some point there might be a MCAS knowledgeable dietician added to the mix (having now found one via the EDS Association website). Plus, of course, I am now cautiously hopeful of gaining some helpful collaboration from a GP!!

At long last, I can stop running multiple train tracks of “what if its this…what if its that” whilst doing all the wearisome fact-finding myself and start leaning into some other people’s expertise whilst targeting all of my approaches towards what is actually known to work best for hEDS (which requires VERY different approaches to rehab exercises, pacing modalities and daily movement compared to the general populace) in the hopes of gaining some vaguely comfortable and sustainable “stability”. By the way I have found the GP Toolkit on the EDS Association website really useful for formulating my own action plan across many aspects of management and treatment. So believe me, this is a happy breakthrough and I was awash with that feeling for most of the first twenty four hours.

Then came the rekoning because, of course, I couldn’t stay in that rosy glow forever. By Sunday morning I was expelling emotions that wanted to be processed into the diary I hadn’t picked up for months and it was a very mixed bag. Yes, all the optimism and relief that I’ve tried to express up above but also the grit and gravel picked up in my shoes on the path so recently trod to get here. Why hadn’t the fact my body “feels different”, “behaves differently” when you manipulate it, as perceived by so many hands-on therapists, red-flagged this long ago? The diagnosis process took just 30 minutes of someone’s time so why hadn’t someone done this before; why did the last rheumatologist shrug hEDS off as such a long-shot it wasn’t worth thinking about? Why hadn’t dentists confronted by years of my overcrowded and hypermobile teeth, endless TMJ issues and unexplainable levels of gum disease given my diligent oral hygiene habits, at least raised the question (by the way there is a discernible move towards encouraging dentists to act as a first line of diagnosis for hEDS these days as there are just so many hints to be picked up on via the mouth, teeth and jaw)? The spleen that needed to be vented, in preference to being shoved back deep inside where it has been bubbling and frothing for far too long, leaned heavily into bouts of the alliteration version of acid reflux (no literary prize-winning material here…these emotions just needed to “out” themselves by whatever means could carry them). Long spiels ensued, listing how I have faced years of “disinterest, disbelief, discredit, disrespect, displacement, disconnectedness, even disintegration at times when things became all too much…yet also so much self-discovery along the way”. As I let go of all the years of carrying around all those heavy opinions that tend to gather around illness like a bag of rocks, not least my own, I splurged out “So as it turns out, I’m not lazy, not hypochondriac, not a malingerer, not attention seeking, not making it all up, not interfering where I shouldn’t, not feeble (far from it), not “over-sensitive” (ditto), not making a hobby or a hyperfocus out of illness, not collecting labels, not depressed nor anxious (except when the circumstances themselves pushed me that way), not trying too little nor doing it all wrong, not lost in self-absorption, not avoiding being a grown-up…or alive”. I have been dealing with a complex multi-systemic health condition with as much grace and determination as I could muster on a daily basis!

I am quite sure I am due to go through a zillion other shades of emotion as I start to sit with this but the over-arching effect is positive. I am already dropping so much of what is no longer relevant to me (the mindsets as well as the approaches) to focus my energy more on living as well as I can with hEDS. One of the least helpful mindsets has been to try and “fix” what is going on and, whilst many approaches gathered have been well-meaning and helpful in their way, an over-reliance on some of them can be as toxic as hell when they are the only approach that you allow yourself to take seriously (as I have found to my detriment on more than one occasion and now I see more clearly why). The most dangerous times were when I attacked myself for continuing to question the “why?” of having so many symptoms in spite of my best efforts to get well, making it wrong to still be in pursuit of an answer. So I am now allowing myself to let the self-justification sink in; acknowledging to myself that I was right to keep on asking those questions, refusing to be shut down by those who would try to suggest I was causing or prolonging my own issues by preventing my nervous system from feeling safe all the time. There is a toxic positivity to any approach that even remotely suggests that you aren’t working hard enough at the practices (whatever those practices are) if you still have symptoms going on. Even though I always committed myself diligently to the methods of various kinds of “brain retraining” approaches, often for very long periods of times to give them a full run for their money, and still keep their most helpful aids in my tool belt of self-help methods to this day, I was right to keep going forwards with my innate curiosity intact because, as it turned out, I still had physical symptoms that I needed to address with physical solutions!

Today when I woke up (though it was noiceable how I had slept much better than usual…the same the night before…with no 3am awakening) I felt almost numb and so dissociated from the outside world that I could barely communicate my needs. There was a dogged stillness in me that made it feel hard to even bat my eyelids and I couldn’t will myself out of bed until an hour or two later than normal, or lift the cup of water to my mouth though I was desperately thirsty. In other words, I was stuck in functional freeze and still am to some extent. I’m so tired-out my body is having to conserve any kind of energy expense to keep its base functions like breathing going. I don’t really want to encourage this disassociation loop longer than necessary so I’m reframing to myself, in kindly terms, why its happening to me in the first place and not really that much of a surprise. After all:

I knew there would probably be a big crash after such a massive peak of excitement and relief

I knew there would be anticlimax

I knew that there would be rejection sensitivity at all the friends and family that stepped over my big announcement like I hadn’t even made one (in spite of the 10 or so that reacted so positively, with so many heartfelt comments)

I knew there would be a serotonin shortage after all the excitement used up my resources in the first 24 hours of hearing the news (this always happens to me; the crash after the peak)

I knew that, as high as I went, the equally low part would present itself sooner or later and the fact a lifelong chronic condition that handicaps isn’t exactly good news would suddenly catch up with me once I had the time to take pause.

I also knew that the realisation of there still being yet more mountains to climb, like another trip to the hospital and seeing the GP later this week, would temporarily wind me now I’ve admitted to myself that I was completely out of stamina “with everything” by the time the letter finally came through (I had seldom ever allowed myself to admit just how weary I am feeling before reaching this milestone). After what has been the longest haul ever to get where I am, its like being told I still have to climb a half dozen foothills straight after coming down from the peak of Everest and not even time to pause and massage my feet!

But it’s alright. If I can allow myself a very still day, even an almost deliberately dissociated day, but not completely switched off (thankfully, writing uses a completely different brain centre and has long been my method of keeping one foot on the ground on such days) I will be able to tank up some stamina and equilibrium again soonish.

Whether the news is good or bad (its really neither), I’ve certainly received a jolt to the nervous system and I know all too well how those can trigger everything and more in my hypermobile body. What I want to avoid here is a full symptom spin-off or burnout. If I can turn this gentle day into a proactive thing, by refraining things, processing the emotions, recalibrating, I’m hopeful I will bounce back with more physical and emotional stamina by tomorrow (when the foothills start appearing on the horizon as I set off for my echocardiogram).

So writing this, as ever, is my integration process, keeping me in touch with my emotions without making too many physical demands. I’m reminding myself this post doesn’t have to be perfection but, when it comes to being real about the emotions of finally received a long awaited diagnosis, it would do well to be honest and “documentary” about what I’m experiencing, not glorifying or tell people what they would expect to hear but doing justice to the smorgasbord of electrical currents running through my system as I process this significant turn of events. It was never going to be just as simple as “and from then on everything was alright” as this is just the beginning; certainly not an immediate reconciliation of all the hardships that led me to this either.

There have had to be just so many reinventions of myself along the way in order to navigate this long path, trying on different “reasons” for very differently presenting health to what most people deal with; so this is yet another reinvention, a reframing, of absolutely everything. Its going to take some time and some settling in. This outcome has also been a whole lifetime in the making and there have been many regrets, delays, wrong turnings, an abject lack of help or support and, yes, things could have been very different if I had known a lot sooner (as was the case when I realised my neurodivergence in my fifties; this feels like it is part of the very same package of misconception, masking and making do). I am going to need the time and space to chomp my way through all of this in my own way but, in this moment, I allow myself to take pause and breathe in some of the validation, the relief, the letting go of baggage and the need to push so hard.

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.