If you know me, you may wonder if I’ve recently undergone a personality bypass. I am passionate about diagnostics, pride myself on ‘making the invisible visible’ through better understanding of pathology markers and confirming the true nature of the underpinning problem in order to be most effective in our management of every client. And I absolutely see that for the majority of patients ‘ knowledge is power’, so what on earth is this all about? Well, while I stand by my stubborn commitment to diagnostic sleuthing for ‘most patients most of the time’, there are occasions when I’m left wondering about the value and the likely outcome should we finally catch that elusive diagnosis by its tail…case in point:
Recently I’ve been aware of a bit of spike in ‘diagnosing’ Ehlers Danlos Syndrome for patients who present with myriad problems – from the text-book connective tissue issues (loose joints, hypermobility etc) to the seemingly more far flung like mast-cell activation syndrome and overactive pelvic floors.
Just so happens this ended up being a thought-provoking 3 way conversation. Got to love having so many wise women’s email ear..and especially such generous ones. First, I ran this case and the differential past the wisest dual qual physio/naturopath I know Alyssa Tait who specialises in pelvic conditions and any and every other bizarre – no-one-else-could-name-it, kind of conditions. And her response, breathtakingly comprehensive and punctuated by copious journal articles throughout as always, proceeded to flesh out the evidence for and against the more unusual patient features and the possibility of EDS from bladder irritability (maybe) to functional GIT disorders (definite maybe) to the dysautonomia link (patchy). But it was what she said next that struck a deep cord for me:
“This happened recently to me when I referred a very difficult Painful Bladder Syndrome (PBS) patient to a GP – suddenly she had EDS as the answer to all her problems. But we can’t change genetics. All we can change is the function, and I have seen a worrying pattern of blaming the unchangeable (EDS) at the expense of looking for the changeable (e.g. an EDS patient of mine who actually had low thyroid function which had been over-looked.)
My feeling is it’s better to evaluate and treat what we see. As soon as we start giving our patients a litany of all the possible horrible ways their health is/will be pervasively affected by a completely unchangeable genetic reality (EDS), it’s a major “thought virus” that can both reinforce the “sick person” self-image and negatively impact their health-seeking behaviour – either by making them give up, ‘cause it’s all too overwhelming, or to follow an infinite journey through rabbit holes that make health their hobby rather than experiencing their life and relationships to the full.”
So back I went to the original practitioner who was contemplating chasing this EDS diagnosis in her patient and she was not short on some of her own wisdom. Like many people who end up working in health Gabby battled her way out of her own ‘no-one-cold name-it’ health crisis before training to be a naturopath. So understandably she sees both sides: