A TRUE STORY
At 17, an illness stopped my life.
What was happening would remain a mystery for a decade, including through a year lived in hospitals, my parents being told to say goodbye, and multiple near-death experiences. Throughout all of it, I was stuck living inside a body no expert could explain. Then the diagnosis, when it finally came - Ehlers-Danlos Syndrome, Dysautonomia, Mast Cell Activation Disorder - was a mixed blessing. It was offered as a life sentence: I would have to manage my malfunctioning forever. This did not make sense to me, because of everything I had already done to that point.
The work I'd touched on during this decade was in four movements, and I trained in almost every discipline it demanded: Human Design and Gene Keys. Psychology - NLP, CBT, hypnotherapy, EMDR, Gestalt, neurodevelopmental work, attachment science, Parts Work. Physiology, from first principles, which turned into nutrition, naturopathy, and functional medicine. Nervous-system attenuation work throughout, and ultimately Somatic Experiencing trauma integration.
The work didn't need to stop once I had a label. In fact, it became even more vital because none of the labels did anything to progress my care. Instead, utilizing the tools I had walked my way towards as a way to meet myself in the midst of my suffering, I began to fully and properly heal. From near-death and the promise of lifelong infertility, at 39 I became a wife, a biological mother of twins, and a stepmother - all in the same year.
At 17, I became seriously unwell. From that moment, my life was changed.
I went from high-achieving vice captain of school, grade A student; to leaving school before I finished my final year. I hunkered down within my illness, and "healing" became my full-time occupation. I was fixing a problem that I knew was there, but had no idea what it was, how to define it, where it came from, or how to wrestle with. The stopping of my life was the start of everything.
What I could never have known when I embarked on my healing journey was that what I was actually suffering from would remain a mystery for over a decade. It wasn't that I wasn't given reasons by others, it's that they were all false - and their inaccuracy became wound into the problem itself. Ten years from sickness to diagnosis, severely malnourished and struggling the whole time. Ten years spent attempting to chase ghosts when I was given labels that others perceived to fit. Ten years where I fought for my voice to be heard, my body to be understood, and all I met with was judgment and a lack of understanding.
Some of that came from my early choice: to keep it secret and try to get through it quickly so that nobody else would notice. A pattern, learned in childhood, that I attempted to cover my suffering with. Then there was the inevitability of my demise which led me to seek support. There was a short-lived hospital stint, which I emerged out of believing I was "fixed". Oh how I wasn't. I had my head above water for a short time, though nothing had really resolved so illness took me under again. In 2008, at 21, I spent that whole year in hospital. My parents were told to say goodbye, as I would likely die that night. I didn't. But that was just one of five times, over those years, that I almost lost my battle to survive. At 24, not because I asked but because some doctor thought it would motivate me into getting better, I was told I would probably never have children. This was repeated to me often in the years that followed.
I was judged, discarded, told it was all my fault, told I had an eating disorder - for decades. The system I was relying on for help, support, and healing couldn't think the way I needed it to. In fact, once cast in a light that invites skepticism over your mental health, the system cannot see you in any other way. This was my first lesson in something profound: everything is colored by the filter you place between it and the world.
Throughout this, my mother never left. She was my rock. She knew no more than I did - perhaps less, actually. But she had witnessed me enough to know my determination. The reason for her faith is only a story she can tell - but, for me, it was the ingredient that made the process possible. She didn't believe me blindly, though. She believed me because the early years of my illness did something remarkable that she got to observe: it thrust me into the work of healing and authenticity in a way that nothing else in the world can do.
My work began inside the mystery. Given a label - false as it might have been - gave me a project: fix my broken mind. As my body failed, and found new ways to implode, the work helped me sit in curiosity. Where the external world rendered judgment, the work I was doing offered grace. Not permission, but space to endeavor to understand. At this time, I believed the eating disorder diagnosis. And I threw myself into everything and anything I could possibly arrive at to resolve my complex "emotional" problem.
The work had four movements. They took years each, and they overlapped, weaving back and forth from the forefront of my attention. None of them were optional. All of them took place before I ever received my labels, but they completed once I had them, which in and of itself is indicative. Most importantly, they happened in the order they arrived - not because one was more important, but because they were where I focused when people told me what they thought I should be looking at.
People told me I had an eating disorder. With no other evidence available, I had to believe them. For years I lived with the terror that I had a whole part of me that wanted to kill me, or at the very least was against me. I could never find it, but everyone around me told me that it must exist. So; NLP, CBT, hypnotherapy, EMDR, Gestalt, neurodevelopmental work, attachment science, Parts Work - providers of all of these came into the fold and used their skills. By the fifth time I thought I'd cracked it, and hadn't, I noticed a pattern. Each one had tried to blame one of my parents, my trauma created at the hands of my caregivers - none of which felt very true. Fascinated by the theme, and still partly convinced that they must all have had a point, I studied the practices themselves to figure out how they were getting this information. I realized something shocking as I did this: these tools weren't diagnostic, but therapeutic. And yet, these providers were doing what medical providers had: labeling me with imperfect words in an attempt to categorize to "treat". The tools were useful, but those wielding them were careless. So I learned the disciplines, retaining what was useful for myself along the way.
And it must be stated clearly that there was something underneath and before all of this - so subtly present that it was just the way we approached things: Human Design and, as it was formed, Gene Keys. Learning these systems predated my illness, but became such a force of strength during it. Mastering these languages felt like breathing to me. It wasn't helping me heal, obviously, and I wasn't keeping it around for that. What it was doing was helping me understand the world, behavior of myself and others, my patterns, my wounding, my suffering, and my way of dealing with things.
This was an important underpinning, because it impacted how I studied anything else. Archetypes and world-understanding stood beneath the practicality of "how people think", or "patterns of behavior". It wasn't invalidating, it placed every discipline in an archetypal sense: what its purpose was and for which part of the human being it offered support.
But it was 2004 when this began, so people labeled these things as "woo" or, worse, actively instrumental in my health challenges - either because they were apparently distracting me from getting real help, or the community I was around was dangerous. It is for this reason that it has taken me over two decades to own this piece fully. These languages of understanding stand beneath my entire perception. They are the filter I place between myself and the world, as a means of understanding it all in the most fundamental way I know how.
Nobody who was judging the Human Design education quite understood that I WAS consulting the professional physiology and psychology experts throughout. When healers failed, I went to medicine - and vice versa. Nobody had answers for me. When I lost faith with psychology, I reverted to focusing on the body that had broken. All I had from doctors was a pointer toward psychology, so again I had to study this myself. I started during one hospitalization, listening to Gary Taubes' early work on audiobooks. Nutrition led to naturopathy, then functional medicine - gaining diplomas and gathering knowledge. Nothing helped. No diet, protocol, systems-biology understanding. I was applying real solutions to my own body, and it just wasn't abiding by the rules.
So I went from paying money to have calls with the world's leading immunology and gastroenterology specialists, to becoming my own version of that. Because of the legacy of what came before, I studied this from first principles: body biochemistry, mechanisms of action, and systems understanding. Even then, with all of this knowledge, I would rotate around a few more hospitalizations, gradually worsening in my cluster of symptoms and suffering.
And it's hard to describe these years well. I had so much pain, I was cold, dizzy, and sick - all the time. I would oscillate between hope and despair mentally, but could never let anyone see that because I would end up back in front of psychiatrists who would blame "depression" for everything instead of realizing that a multi-year illness would lead anyone to experience depression.
When it came, it was pure luck that landed me upon my own diagnosis.
A receptionist at my local doctor's office was chatting to my mother when she was getting more nutritional replacement drinks ordered for me. I think my mom was lamenting about how I was doing, and the receptionist made the offhand comment that my symptoms sounded like another patient at the practice, so "does she have a connective tissue disorder too?"
My first google of this newly named thing revealed something alarming. She was not just right: the whole way of being I had, and exactly the way my illness had taken shape, fitted the pattern of a connective tissue disorder almost exactly. It pieced into place the bits that never fit, and let me land inside the truth.
After a full decade of being near death's door without answers, I paid more money to specific experts to get them to do the one thing that had been so badly missing: accurate diagnoses. And they came quickly when they came.
Ehlers-Danlos Syndrome. Dysautonomia and Postural Orthostatic Tachycardia Syndrome (POTS). Mast Cell Activation Disorder. The immunologist also gave me Non-Celiac Gluten Sensitivity, for good measure. Full explanations for everything my body had done, for over a decade. The physical reasons behind my suffering - even, eventually, a verdict from the world-leading expert in Ehlers-Danlos Syndrome which said, simply, "this diagnosis can explain everything she has experienced for her health in the last ~10 years." Exoneration, for anyone who cared (few did), that I was genuinely living inside a body that was struggling to function, not a soul that was struggling with life.
I thought I'd get drugs, treatment, and a way out. I tried a couple of the medications, I got profoundly worse. Then the final hospitalization occurred, which ended with the life sentence: I would likely never be able to eat again, so I would have a tube fitted directly into my stomach to feed me.
This procedure went ok, but the feeding then went badly wrong and the tube needed to be removed around a week after discharge. The only way to eat was then manual insertion of a tube into my stomach each night, and removal of it in the morning while I still tried to eat food, or drink nutritional replacement drinks. I was told that I would never experience life normally, and certainly not be a viable woman or mother. The focus shifted to how to make my life bearable, and survivable, for a time.
I rejected every single premise I was handed. Actually, I will be honest, I rejected the whole medical profession after I received this prognosis. From that point, I did my own healthcare. I still worked with doctors - I just didn't ask their opinion on my stuff. And I didn't ask again until I was pregnant - which is a sneak peek ahead to where this ends up!
Rejecting medical teams was really easy by this point, because the labels were finally right - and they were fundamental.
It wasn't that I hadn't known I needed to be seen and met in my suffering - the deep therapeutic modalities told me that. It was that I hadn't been able to do that. Now, armed with explanations that made sense, resonated, and justified the hell I had lived through, the diagnoses were the beginning of a settling in my own skin that I had desired for a decade. I knew the literal pieces of myself that had broken in response to my life. It was a foundation stone that I needed.
Trauma. Nervous-system settling and the recalibration of threat.
At this point I refused to go down with the damning "you'll never" list that I had been handed. One day, re-intubating once again with a nasogastric tube to be fed overnight, I just snapped. Somewhere unconsciously my body recognized the truth: the reality I was forced to live because it was terrified of everything was insane and ridiculous. I could get over it. My body needed to get over its solid verdict that everything and every part of life was a threat. After near death experiences, and a decade under severe threat, I had to make the choice to take one more leap of faith: that the world was just safe enough for me to inhabit it.
I had tools - I had somatic work, and the Human Design and Gene Keys frameworks. I also knew everything about my symptoms, nutrition, and my resilience. And so, I rebuilt my ability to be with reality from the inside-out, and ground up. This wasn't about a diet, or a digestive system. It was about finding my way to feel safe in a body that had been beyond broken for years, and a world that had done its best to break it before that.
Everything was inside my nervous system: threat calibration, interpretation, sensitivity, vigilance, and reaction patterns. They were significantly worse at 27 than they had been when I got sick at 17, and that in and of itself was a clue. My body had broken with the weight of its trauma, and every shred of life from then on had doubled down on its correctness at how intolerable life was. That was what needed work. Delicate nervous system reprogramming, entirely by myself. One mouthful at a time, at first. One experience. One confidence boost.
Eventually, I would realize that there were pieces that required being met by other professionals. It was simple: the grip and get through attitude that was essential to get me from my life sentence to actually living was good enough. It worked. But it left me with a residual coping pattern of low-key anxiety, all the time. That was masking some pieces that I'd left out of my integration, and it was Somatic Experiencing that allowed me to experience not just full trauma integration and the piecing back together of my system in ways I didn't realize I still needed, but it also allowed me to drop the strategies I'd used to get myself back from the brink. So, as is my pattern, I qualified in that too.
As I was regaining my safety in the world, my "getting back to real life" exercise had a lot of false starts. A high-level career in London - paused, because it was exactly the wrong energy for my system (but, of course, I needed to try it and suffer for a little to figure that out). Then the medical career where I was the boss, and became incredibly successful. That was also paused, because I was experiencing a lack of integrity: somewhere along the way I had jettisoned my eye and my dictionary, the seeing and the language I see in. What followed was eighteen months in South Africa as the world went quiet, finding my permission to see properly again. Then to America, to see what happened - prioritizing place, and community.
The goal of the therapeutic work I do, and was doing on myself, is not (and should never be) to become an expert in oneself and/or therapeutic behavior. The goal should always be so that your patterns and adaptations cease to impact your quality, vitality, and fullness of life.
So it was that without trying, without meaning to, and certainly without aiming myself at it... I met my husband. I wasn't looking for a relationship, and my husband wasn't offering one. We were professional partners - and really, really good at that. I finally relaxed fully into feeling like I was doing good work, with great people, and then Caleb started triggering the fuck out of me. It was terrifying, but I did what I do (much to his horror, at first!!). I leaned in. I explained to him how his patterns were triggering stuff in me that was nothing to do with him, but that I wanted to move through them so I could heal. And I did the bravest thing I've ever done: I asked him to help, just by listening to me share the triggers and the needs I was noticing. I didn't share the stories, I literally just asked him to witness the chaos. He was confused, unsure of what the heck he should actually do, but willing to lend his nervous system while I did some processing.
Healing things for me healed things for him, in ways neither of us were expecting. His story can exist elsewhere, but for my part I watched my then business-partner's life fall apart and it was more than obvious to me that I would stick with him through it, no matter the reasons behind it. Amidst all the chaos, he had become a safe place for me, and I for him. For both of us, it was the first real time we'd had that opportunity. Our union became somewhat inevitable (though not in any way easeful to fall into for either of us). And then, so rapidly, after all the promises I was made about my inability to carry a child, we were pregnant. It was a shock, and again it wasn't on our list of desires. But it was happening - and so gratefully received.
At 39 I became a wife, a mother, and a stepmother in the same year. The fact that my husband moved in to stay with me temporarily and simply never left is the testament to the work.
But it's not that doing the work gets you a family. It's that doing the work tends to take you to your next evolution. And this is mine: family, more strain and burden than I have ever had before, an entire complexity which demands that I cannot break, and my resilience is tested every second. And, for shits and giggles, life keeps finding new ways to test my sense that it is safe!!
And now I look at the work - the hats I've worn that reflected some of what I had helped myself with. What I realize and what I have struggled to find the strength to say until the experience of motherhood has given me no choice:
Because I know the consequences of not being seen, not being met, not being witnessed, not being allowed to be.
I found the ways, eventually, to meet myself. I found the courage to see myself. And I found the life that empowers me to offer this to those I come to meet.