So much resonates here. I am sitting particularly with this: “What was needed was validation of other modes of knowing — the somatic, the intuitive, the relational — as legitimate sources of information about one’s own experience. The file they received was built, in part, on the system’s refusal to recognize those modes as real.”
Going to sit with this over coffee tomorrow morning to give it proper focus. I skimmed the intro to see if this was what you’d mentioned you were working on since our podcast episode and it looks like it is…very excited to read what you have to add.
I don't know what to say after reading this piece. You articulate the experience of a medical system that was designed for compliance so well and without polarisation. That is a gift of an Autistic woman who can hold nuance. I relate so much to this, and to my own experience of healing my Crohn's, not through the medical system but by listening to my own body, inner wisdom and following my intuition. Not once did my specialist ever ask me what was going on in my life, only about my symptoms and if I was taking my medication. If they had, they would have found that every area of my life was built on performance and masking. It took me 44 years and walking away from everything I had ever built to realise this.
My saving grace was the journals I have always kept since I could write, and that is where the truth lived: a world the life I had built could never comprehend the depth of my mind and understanding of the system and innocent curiosity that questions everything without the need for a simple answer. There was no place for that in a compliant world. I learned that the only place I was not too much was in others' pain, so I made it my life's work to live there and disappear into them and what they needed. I started counselling people when I was 17, volunteering at a community centre, and turned it into a career. In truth, it started much younger than that, but professionally it is what I have done for nearly my whole adult life, because the system loves a martyr, particularly a female one.
I got so good at reading people like a book I never asked to read, and absorbing their pain like a sponge that was never rung out. My gut was absorbing it all, on a personal, professional and collective level, until the intelligence of the bodymind said we need to thicken this wall and put a boundary up. They call it Crohn's, an interesting name considering the Crone archetype represents wisdom, intuition and the culmination of lived experience, which was exactly what my dis-ease was protecting. It wasn't until I started listening to her, instead of suppressing her through medication, that her voice gave rise to the truth I was ready to hear.
One area of my life at a time, I examined with the precision of a surgeon's scalpel, dissecting piece by piece, with one question and one unwavering devotion: to the truth. Was this true for me? Not anyone else, not the system, for my body, mind and soul. The answer lay not in my mind but in my nervous system's response, and now that I was listening, it was screaming no. The internalised, suppressed rage of self-abandonment was no longer able to hide as early menopause intersected with motherhood, merging the Mother and the Crone into one raging fire that burnt the whole forest down, nothing spared, everything stripped unfathomably bare. The fire that was raging in my gut was the very fire that started the fire in my life.
I sat in the ashes with my grief and rage for quite a few months, feeling everything I had suppressed through medication, through relationships, through friendships and through others' pain, and started building healthy boundaries and laying the foundation for a life that had stayed locked in my imagination until I was ready to plant the seeds. Then she started to quieten down, she didn't need to protect me anymore because I could protect myself and use the high sensitivity to listen to the subtle calls, so she didn't have to scream and inflame to get my attention.
My new holistic gastro told me my Crohn's was no longer active and I did not need medication, and if I did get a flare-up it would be treated with diet, not medication. I am now part of a regular supervision group of leading doctors in Australia in whole-of-person healthcare. My supervisor is an 82-year-old retired immunologist and psychotherapist who has devoted his life to understanding the mind-body-spirit connection by seeing the patient as the expert and deeply listening to the story the body is telling, which he believes is the key to cure and prevention. I am honoured to be the only social worker and therapist in this group, able to bring my 15 years of professional experience in public mental health and addiction, my lived experience and my neurodivergent brain to this table to ask the question: what is the body trying to tell you? And then just listen to the story, and in the conscious space of awareness, it's finally being heard that the healing starts to happen.
I made a decision when I left my career to build something outside the system that I would change this system. Now I am sitting in the room every fortnight with doctors who are. In the hopes that in the future, when we walk into a doctor's office, they put their pens and script pads down and just listen with curiosity and compassion to the human being in front of them.
So much resonates here. I am sitting particularly with this: “What was needed was validation of other modes of knowing — the somatic, the intuitive, the relational — as legitimate sources of information about one’s own experience. The file they received was built, in part, on the system’s refusal to recognize those modes as real.”
Yes. Sit with this. It takes a minute.
Mirror Friend. 🧡
Going to sit with this over coffee tomorrow morning to give it proper focus. I skimmed the intro to see if this was what you’d mentioned you were working on since our podcast episode and it looks like it is…very excited to read what you have to add.
It's another long one. 😅
I’ll be turning on the read feature and sipping my cuppa !
🫂❤️
https://autside.substack.com/p/they-took-my-life-but-let-me-live
https://autside.substack.com/p/the-wrong-reader
I don't know what to say after reading this piece. You articulate the experience of a medical system that was designed for compliance so well and without polarisation. That is a gift of an Autistic woman who can hold nuance. I relate so much to this, and to my own experience of healing my Crohn's, not through the medical system but by listening to my own body, inner wisdom and following my intuition. Not once did my specialist ever ask me what was going on in my life, only about my symptoms and if I was taking my medication. If they had, they would have found that every area of my life was built on performance and masking. It took me 44 years and walking away from everything I had ever built to realise this.
My saving grace was the journals I have always kept since I could write, and that is where the truth lived: a world the life I had built could never comprehend the depth of my mind and understanding of the system and innocent curiosity that questions everything without the need for a simple answer. There was no place for that in a compliant world. I learned that the only place I was not too much was in others' pain, so I made it my life's work to live there and disappear into them and what they needed. I started counselling people when I was 17, volunteering at a community centre, and turned it into a career. In truth, it started much younger than that, but professionally it is what I have done for nearly my whole adult life, because the system loves a martyr, particularly a female one.
I got so good at reading people like a book I never asked to read, and absorbing their pain like a sponge that was never rung out. My gut was absorbing it all, on a personal, professional and collective level, until the intelligence of the bodymind said we need to thicken this wall and put a boundary up. They call it Crohn's, an interesting name considering the Crone archetype represents wisdom, intuition and the culmination of lived experience, which was exactly what my dis-ease was protecting. It wasn't until I started listening to her, instead of suppressing her through medication, that her voice gave rise to the truth I was ready to hear.
One area of my life at a time, I examined with the precision of a surgeon's scalpel, dissecting piece by piece, with one question and one unwavering devotion: to the truth. Was this true for me? Not anyone else, not the system, for my body, mind and soul. The answer lay not in my mind but in my nervous system's response, and now that I was listening, it was screaming no. The internalised, suppressed rage of self-abandonment was no longer able to hide as early menopause intersected with motherhood, merging the Mother and the Crone into one raging fire that burnt the whole forest down, nothing spared, everything stripped unfathomably bare. The fire that was raging in my gut was the very fire that started the fire in my life.
I sat in the ashes with my grief and rage for quite a few months, feeling everything I had suppressed through medication, through relationships, through friendships and through others' pain, and started building healthy boundaries and laying the foundation for a life that had stayed locked in my imagination until I was ready to plant the seeds. Then she started to quieten down, she didn't need to protect me anymore because I could protect myself and use the high sensitivity to listen to the subtle calls, so she didn't have to scream and inflame to get my attention.
My new holistic gastro told me my Crohn's was no longer active and I did not need medication, and if I did get a flare-up it would be treated with diet, not medication. I am now part of a regular supervision group of leading doctors in Australia in whole-of-person healthcare. My supervisor is an 82-year-old retired immunologist and psychotherapist who has devoted his life to understanding the mind-body-spirit connection by seeing the patient as the expert and deeply listening to the story the body is telling, which he believes is the key to cure and prevention. I am honoured to be the only social worker and therapist in this group, able to bring my 15 years of professional experience in public mental health and addiction, my lived experience and my neurodivergent brain to this table to ask the question: what is the body trying to tell you? And then just listen to the story, and in the conscious space of awareness, it's finally being heard that the healing starts to happen.
I made a decision when I left my career to build something outside the system that I would change this system. Now I am sitting in the room every fortnight with doctors who are. In the hopes that in the future, when we walk into a doctor's office, they put their pens and script pads down and just listen with curiosity and compassion to the human being in front of them.