Of course, there was a media storm. Much like the time when Jameela Jamil acknowledged having Ehlers Danlos Syndrome and another autoimmune disease. But there was also a lot of confusion, and outcry.

The Ehlers-Danlos community did two things with this public statement. Firstly, they welcomed Sia with open arms into their community. Now, I already have a reservation about patient groups, specifically about groups focused on illnesses. I think that these have both value and huge consequences. I think there is both blessing and danger to find kinship and connection with those who are unwell, but perhaps this is beyond the scope of today’s article. I did not see Sia asking to be invited into a group of those who shared her genetic connective tissue disorder, or her chronic pain, but I wouldn’t like to comment on how she feels about now “belonging” to one.

But secondly, and most importantly, the instant rush from the Ehlers-Danlos Syndrome (EDS) community was to issue the very formal statement that Ehlers-Danlos was a connective-tissue disorder, and not a neurological disorder. The universal comment repeated across many of the influential EDSers feeds was that Sia’s statement likely implied that she had BOTH Ehlers-Danlos and a neurological disorder – and not that she intended to imply that EDS gave her a neurological disorder, or was a neurological disorder. Of course, the press that surrounded the story of the tweet further confused the issue, and many articles have since been rewritten making it clear that EDS is “not considered a neurological disorder”.

And so, instead of this being about EDS and publicity generally, there became just a lot of noise about stating that Ehlers-Danlos was solely a connective tissue issue. And this angers me deeply. Not because EDS so often comes with associated conditions (so-called comorbidities), but because to isolate EDS into being SOLELY anything is to, in my humble opinion, miss the whole entire point of what makes EDS… EDS.

It is the siloing of illnesses into one system of the body that I believe creates the lack of service and assistance for those with EDS, and (for that matter) all other conditions which are multi-system and have multiple system effects. That our professional medics cannot (and often are not allowed to) think outside their specialism is one thing. That the patients themselves are being pushed into thinking of themselves in a myopic way frustrates and upsets me deeply.

Ehlers-Danlos syndrome itself may be a condition founded on connective-tissue laxity. However, it is untrue to then imply that every other condition that often accompanies EDS is an “and” and not a consequence. I believe that it is this chronic lack of understanding about the impact and the extended consequence of connective tissue laxity that allows so many people in this “community“ to be underserved.

Ehlers Danlos IS a connective tissue disorder. But in rendering this as a condition which ONLY affects skin extensibility or joint laxity is to miss the whole point. Connective tissue is EVERYWHERE. Collagen is everywhere. Through its fundamental role in forming a foundational part of the extracellular matrix, collagen and nerves will be intimately and forever connected. Having EDS affects collagen so it WILL affect your nervous system. Whether that is deemed a ‘neurological issue’ or not is, as with everything in EDS, a question of severity. But having connective tissue laxity can’t not impact your nervous system – and many other systems in the body besides. EDS CANNOT be pushed into a ‘rheumatology’ box. Any attempt to do so is what leaves patients alone, frightened, lost and feeling misunderstood.
I believe that if those with connective tissue issues are informed early enough of the connection to the nervous system, and indeed if the professionals who take care of those with connective-tissue disorders become at least slightly aware of the interrelatedness of physiological systems, then maybe the full blown “dysautonomia” or “MCAS” issues that so many deal with may not develop because life will be lived in sync with our bodies, not irrespective of their weaknesses and sensitivities.
To take care of our nervous system is to take care of our physiology as a whole. To deny the nervous system’s role in our bodies and illness, especially in connective tissue disorders, is, I believe, incredibly negligent.


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