For years…decades…in fact most of my life, I had no idea I was neurodivergent and equally no idea (beyond a vague concept that my joints tended to be hypermobile) that I have a heritable joint hypermobility syndrome that affects literally everything to do with my health, inside and out.

All I really knew, relative to these things, was that I always felt different, like I was the square peg, the hypersensitive one, the anomaly, the one that got left out, misunderstood, disbelieved or treated as the health wimp.

Increasingly, what I knew was that my health was “glitchy” beyond a comfortable or acceptable level, that pain and complications seemed to be my normal state, that nothing ever came easy for me because there were always shadowy reasons why I seemed to struggle more than average or have various niggles crop up. For instance, all the many viral, pelvic and back issues I had materialise in my 20s as I first entered adult life, even more glitches during pregnancy and post childbirth or when perimenopause came along and when it came to doing “normal” things like walking, running or taking part in sport, even holding down a straightforward nine-to-five job (something I became avoidant of, via various attempts at self-employment from an early age, because I simply couldn’t cope with the rigours of desk work or having to perform in a consistent way, day after day, when my health was so desperately variable).

By late 30s, I was utterly burned out and in such chronic pain that I wasn’t able to manage it at all. I was routinely having to use a TENS machine at my desk, my office drawer was full of strong over the counter meds that I was becoming increasingly sensitive to and I was attending acupuncture sessions in my lunch breaks to no avail but on top of all that was the ever worsening fatigue, the multiple sensitivities and the dysautonomias causing dizziness and other bewildering symptoms that had me in real terror for what was happening to me. I was a single parent of a five year old child at the time…but had no choice in the end but to stop work.

After that, various labels…fibromyalgia, chronic fatigue syndrome and (by GPs but never by me) health anxiety…were applied but it was to take coming up another 20 years before the more accurate ones…autism, ADHD, hypermobile Ehlers Danlos (hEDS), dysautonomia including postural orthostatic tachycardia syndrome (POTS) and mast cell activation syndrome (MCAS) were to come along.

This year, at the not so tender age of 57, I finally got diagnosed with what is sometimes referred to as the “trifector” of hEDS, dysautonomia and MCAS.

I also want to flag up two milestones which made my physical traits much more severe and therefore more noticeable over the years. One was the period known as perimenopause and especially post menopause, as is often the case given the dire impact of hormonal changes upon collagen and the fact that they can make it much harder to override or mask traits such as executive dysfunction or sensory sensitivities that may have previously remained under the radar.

The other was the fact I was prescribed a Fluoroquinolone antibiotic back in 2014 for a kidney infection and experienced a severe adverse reaction, following which neurological and laxity problems became markedly worse. I now know that anyone with Ehlers Danlos or other connective tissue disorder should not be prescribed this particular family of antibiotics due to a number of known adverse responses since identified by the FDA (see article and there are numerous discussions on the topic in EDS forums) and this is now flagged in my medical notes but rather too late for all the damage that has been done. Most doctors will not be aware of this conflict unless it is highlighted to them!

There was a time when my introduction to this blog was long and rambling, taking the reader on a convoluted journey through a myriad of bewildering symptoms experienced over many decades, leading to the vaguest concept of being someone with “a chronic pain syndrome” (and there are so many of us, bumbling around in the dark and largely sidelined by medical professionals; my natural audience). Diagnosis makes my preamble all the more brief…because everything that has ever happened, and is happening, with my health can be attributed to the complex I just described. The jigsaw is finally taking shape.

So it turns out I am neurocomplex (not just autistic and ADHD but highly sensitive, gifted and a synaesthete) and that I live with the above trifector of conditions which, all together, makes for a multisystemic burden impacting every single aspect of my life, as it has for as many years as I can remember but at least I am now in the know. By the way, self-diagnosis of autism is perfectly valid but I have now been formally diagnosed, which has helped me in numerous ways including putting to bed all of those niggling self-doubts and the imposter syndrome when talking to, or comparing experiences with, other neurodivergent individuals (it’s also helping enormously with reframing the earlier part of my life and adopting a neuro affirming, rather than deficits based, outlook for my future).

At last, I have some idea why it has been just so very hard to be me and with knowledge comes improvement of sorts because there are ways (and I am steadily finding them) that I can now learn to adapt my life to make it more comfortable and appropriate for my needs. With the spirit of “better late than never”, I continue to share what I can in the hope that other people will get there rather sooner than I did.

One of the things I want to share with anybody landing on this page because of similarities with their own story is the beacon of hope that is Low Dose Naltrexone. I came across LDN because of hearing so many positive anecdotes to do with managing the trifecta or fibromyalgia or long covid (which I have also recently had) and even autism and autoimmunity. I’ve been taking LDN for a couple of months now with incredibly positive effects and will share more in due course but, in the meantime, I invite you to visit the LDN Trust for more information and case studies. I only wish I had known about it sooner. It’s not a silver bullet by any means but there is much to be hopeful about as one of many tools for living a better quality of life.

Not only has my journey through the territory of realising my neurodivergence and making peace with it allowed me to put down, and unmask myself from, all the countless ways I once tried to adapt and pretend my way towards “fitting in” with a more neurotypical framework of life (trying to force myself to conform…with all the various negative consequences of doing that) but my realisation of this health complex has allowed me to appreciate the sheer immensity and complexity of the physical burden I have had to carry, largely all alone to this point, ever since the very first more obvious manifestations of symptoms around the age of puberty onwards.

Its been a long and lonely journey and I have had to try and reconcile myself with the sense of loss that inevitably comes from having lived a whole lifetime struggling in the dark.

To be clear, it took a concerted, self-funded effort to achieve the diagnoses I now have…and it continues to take a monumental self-funded effort to put together the support team and survival kit that now assists me in the management of my daily life, an effort which will have to continue for the rest of my life since there can be no “recovery’ (a word I used to use a lot in the early days of writing in this space…) from hEDS. Not everyone is so fortunate as to have the resources to pursue their own diagnosis and treatment plan and there is so much that is so desperately wrong with the system as it stands, which is why sharing the real cost of living with these conditions is just so important; we need to be heard and to have medical professionals buck up their act!

On the plus side, a steady increase in new information about the lifetime burden of hEDS has been noticeable in recent months (at time of writing 2025).

One such source of information is a new groundbreaking study just released: The Norris Lab has carried out one of the largest international surveys ever conducted on hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobile Spectrum Disorders (HSD). By challenging some of the pre-existing ideas this will hopefully lead to improved clinician understanding and better outcome for patients. Highlights include:

• An average 22-year diagnostic delay for hEDS (well over 40 years from symptom onset in my case)
• High rates of misdiagnosis, even under current criteria (common labels, as were applied to me, are fibromyalgia, chronic fatigue and anxiety)
• Multisystemic burdens spanning immune, neurological, gastrointestinal and autonomic systems (topics long written about here)
• A high prevalance of Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation Syndrome (MCAS) and allergic-type conditions (at last, with persistence, I have had these clinically validated by specialists)
• Significant out-of pocket costs and healthcare strain (so far this year my health related expenses total around £7k)
• On average around 5 specialists seen per year (this year alone I have seen 6 specialising professionals on multiple occasions, 3 of them consultants)
• Evidence that hEDS and HSD may be complex syndromes, not just connective tissue disorders (as I have long maintained).

Source: Defining the Clinical Complexity of hEDS and HSD: A Global Survey of Diagnostic Challenge, Comorbidities, and Unmet Needs

With such a summary at my finger tips, I find that there is little need to make this revised introduction to my blog any more convoluted than to say that I write about all the various aspects of living with this multisystemic burden along with the neurocomplexity that underlies it because it continues to be just so important to get this information out there. Lived experience is tremendously important…I feel I can justify that statement from the point of view that the experiences of others have sometimes been the only thing to shine light on the dark path of these last 20 years when other information has often been so scarce. The most helpful insights have often come from the most abstract-seeming discussions or most playfully exploratory sources, not only the most highly “researched”, so I think it’s important to consider all angles of information and dot-joining equally valid. My own posts are as diverse and distractable as I am, their topics jumping around wherever my current fixation takes me but then that’s just part of the adventure of my neurodivergent mind.

I also continue to gather and share useful resources along the way, which can be found under the various headings at the top of this page.

Disclaimer:

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 a substitute for medical advice, diagnosis, treatment, or prescribing. This article does not constitute a recommendation or lifestyle advice. Opinions are my own based on personal experience. Please seek medical advice from a professional if you are experiencing any symptoms or before you change your diet, your nutrients, your habits or anything else.