DISCUSSING DIGESTION: Healing the COMMON Digestive ISSUES in Ehlers Danlos and Connective Tissue Spectrum Disorders
I have been very reluctant to talk about this, for three reasons.
Firstly, there is a lot of shame associated with the digestive complications that I have personally dealt with, and that can be a part of more complex presentations of Connective Tissue Disorders (CTDs).
Secondly, if you ask anyone who knows me, I do not begrudge or complain about anything that has ever happened to me. This is not an act, or an attempt to will my way into believing this: I genuinely know that everything that has happened and will happen to me, ever, is as it is and was always meant to be. Going through what I have been through has made me who I am - and will continue to do so. There are no ‘bad’ experiences in my past - it is just my life.
This hit me when someone said to me this week, “Yeah, whatever, you’ve had a hard life - I get it” to me in the middle of an argument. It shocked me so much because I literally don’t see my life like that. It’s been a gift of a life because it forced me to evaluate and learn about everything it means to be human. This may have been done through the ‘life experience’ of physical issues and life traumas, but these are the training grounds.
And then there’s the third reason: I honestly don’t believe that segmenting us according to symptoms is how to support health. The symptoms on the surface are the mechanism through which we evolve. Healing those issues isn’t about getting lost in the specifics, but truly asking why they are there, what they are here to show us and how we can support our being (body, mind and soul) to effect their resolution.
So to my health issues.
My challenges with food have deeply altered everything about my body, my life, my mindset and my world. They have emanated out of far more than just the physical and they have so many different roots.
Symptoms are reflections not just of physical struggle but also of emotional, mental and spiritual battles and challenges. Truly doing the deep work to understand ALL of those roots is how I have ‘healed’ anything at all. (Note: this is not a dietary style, or a supplement protocol. This was inner work resolving my inner battles.)
More than this, I am almost convinced that the issues present when there are digestive complications must revolve around our relationship to life itself.
I have been challenged with an inability to nourish myself; therefore I have had to truly evaluate very deep themes of life, sustenance and support.
Food is love, right? Well, why has my body struggled so desperately hard with accepting love, nourishment, sustenance, support?
This also revolves around ‘safety’ and my relationship to it. It all sounds very ‘meta’ and hyper-cognitive, but has all honestly been evaluated as I’ve watched my physical body struggle with food. This isn’t just my surface issues either, or mining in past relationships or trauma triggers. For me, this has taken me deeper into the challenges of archetypal wounding patterns and processing suffering in a very profound and even transpersonal way.
This is why when I receive a patient in my clinic who has the digestive distress inherent in connective tissue disorders, I have the broadest possible attitude and approach. It has very little to do with food or the gut biome, almost nothing to do with the tissue laxity itself - and everything to do with the nervous system, and management of stressors to facilitate healthy gut motility.
What has built that person’s nervous system, and conditioned/programmed its patterns, is part of their unique history. And whilst themes of love, safety, nourishment and receiving may run throughout - each person’s journey within that is different. My work aims to understand that, AS WELL as traverse the tricky realm of the nervous system inherent in Ehlers Danlos Syndrome.
What the Doctors Say About Digestion
For the Ehlers Danlos Syndrome (EDS) medical professionals, digestive issues are thought to be mostly to do with tissue laxity. And whilst tissue laxity may be involved, the internal structures of the digestive system are regulated and controlled by the nervous system.
I will get patients arrive at my door on all sorts of pills: supporting motility (movement through the upper and mid-gut), relieving constipation, providing assistance for acid and enzyme production - and often numbing sensations with low-dose anti-depressant medications. This is the classic prescription array from a gastroenterologist trying to fix the system of the gut without thinking about it in a broader context.
This is also the classic approach to EDS and Connective Tissue Disorders: you can’t do anything about it, so use a ‘management strategy’ that will medicate someone for the rest of their life.
Quite frankly, I think that is insane. So much of the negative outlook within the EDS/CTD community comes from this fatalistic attitude handed down to patients from the doctors overseeing their care. And it is a reflection of something that I profoundly disagree with in healthcare: settling, resignation and the removal of hope.
How I Approach Digestion
My challenges with food and digestion led me to develop my rather unique take on connective tissue disorders. And yes, I am convinced that there is a need to evaluate deeply conditioned patterns around love, safety, support etc. (as mentioned above).
But why? Because health for someone with a connective tissue disorder is not actually too complex; it revolves (as it does for everyone) around managing stress.
And stress perception/response is regulated by the nervous system (hence my obsession with it).
The nervous system is the interface which regulates internal/external awareness and response - and it has a slightly different set-point within EDS literally because of the way the extracellular matrix, nervous system and collagen all interact.
Every patient I have who has Ehlers-Danlos Syndrome, Hypermobility Spectrum Disorder or any other form of Connective Tissue Disorder gets a PDF, created by me, explaining all of this. In a lot of depth. It covers the ‘personality’ side of those with EDS - a theme you only see when you spend most of your days talking to people with these connective tissue conditions. It also discusses how the co-existing conditions deemed ‘random’ in those with CTDs - especially the mental health elements - all have one link: the nervous system and how the set point of ‘threat’ in someone with inherent vulnerability in their structure and connective tissue is different.
(I am contemplating making this available as a PDF for purchase (cheaply!) on this site - do comment below if you would like this.)
None of this nervous system difference is a bad thing. I’m pretty convinced that, recognised and respected, it becomes the sensing superpower (rather then oversensitivity).
But it does mean that everything about managing the health of someone with a CTD should NOT be pills and potions which do all the jobs FOR us. But instead it should be based on managing stressors and supporting our ability to deal with those stressors (this is actually ALL of health, right - this is all that’s actually necessary, for anyone). Understanding the EDS/CTD persons’s predisposition to tension, sensitivity and reaction allows us to put in place support structures, lifestyle techniques and other helpful tools which facilitate:
Appropriate and timely parasympathetic nervous system activation (rather than pure sympathetic nervous system dominance)
Accurate brain-body communication - because ‘hearing’ our signals is paramount to appropriate responses
Lowering of ‘reactivity’ patterns (immunologically, physically, emotionally)
Effective pain management/sensing - mostly, decreasing pain entirely simply because pain is neurological and is often just a way of getting attention when the nervous system is simply ‘on guard’
What I Do & Recommend
This is why everything about my strategy for digestive support must start long before we even discuss WHAT food we’re eating. In fact, the food itself is largely immaterial. Everything is about your body’s receptivity to (and readiness to process) that food.
This means that environmental cues, emotional health, spiritual wellbeing and general stress are all more important to your digestion than whether you consume gluten or not (for example). This is not about the food, it’s about your body’s tolerance of and acceptance of that food.
If the acid and enzyme levels of your body are inappropriate for digestion, again this requires relaxation and the ability to access rest and digest mode (parasympathetic activity).
Gastroparesis often emerges because of discrepancies in the above. Achalasia is different - this is a swallowing and upper gut motility problem, highly linked to anxiety/emotional distress and (for me in particular) mast cell predominance and activity.
But again, the stability and/or degranulation of mast cells (immune cells containing inflammatory compounds) is regulated by the immune system, which is instructed to attack or not based on the reading of the internal and external environment by… the nervous system.
This is why I am obsessed with the nervous system. Because everything else is a consequence.
It is understanding health from this perspective that has empowered me to get on top of my digestive stuff, significantly.
It is knowing the complexity of what plays into and impacts upon nervous system communication - and also the hardwiring of the nervous system into ‘attack’ or ‘fight’ mode - that gives me my truly holistic approach to healthcare.
It is in knowing how the body is affected by belief, feelings, historic trauma and patterns which empowers me to know that when I get a flare I can manage all of the physical stressors, and I can see a chiropractor, make my food simple and non-stressful, pull back on the HIIT workouts. But I also have to manage ME, to manage my emotional conflicts and sensations, to manage my fear and my sense of purpose. All of these regulate the nervous system: thoughts, belief and connection matter more than anything else.
It may sound like an extrapolation but this is why healing digestion if you have developed conditions such as those mentioned above really requires healing your relationship to yourself and to life itself.
And it is why, whenever someone comes to work with me, we talk about ALL of the mindset, spiritual, purpose and belief elements - and we address the deep themes of safety, support, love and surrender.
Because everything in life depends on a nervous system that is able to cleanly and appropriately interpret and respond to threats. If our mindset, emotions, fears, histories or current stress are interfering with that, our responses and adaptability to life (and sometimes the sheer ability to digest food) will be affected and lead to symptoms, illness and suffering.
Depending on the response to this blog, I may begin to write more and more about what illness really means, the hidden signals in the symptoms and how to then process this when ‘fixing the physical’ isn’t anything like the right solution.