on nervous system expressions
I recently started a mind body coaching program (another story unto itself, which I realized I haven’t shared yet because my mind has been so wrapped up in being a student again as well as some other big life changes) with my area of focus in this training program being on the intersection of solid organ transplantation and somatics. Just that phrase alone gives me full body chills, and I’m so excited to be doing this work. I promise what I’m about to share connects, and that I’ll share my research regarding this topic a little later.
So in my studying for the class and practicing with classmates serving as clients, I encountered something else, another area where I’m beginning to connect the dots that I wanted to share with you.
My journey post transplant has been a wild one. Post transplant healing has been this all encompassing mind, body, somatic experience. One of these adventures in healing means reconciling with the person I was pre-transplant, the ways I was failed by the system and how things could have been different. A few months ago I ended up back in my childhood doctor’s office for what ended up being the worst doctor’s visit of my entire life where I was essentially gaslit for hours straight, then told I was the problem and I failed the treatment and not the other way around. That encounter devastated me, and I spent a really long time trying to figure out how to articulate what I was feeling. I never want to speak on behalf of another person, and I do genuinely believe the same system that failed me failed this physician, which terrifies me for the future of healthcare. It’s one of the reasons now I work in holistic patient care. One of the things I’ve had to come to terms with is the things that were missed, and still remain unacknowledged, and how much could have been different if I’d been cared for in childhood as opposed to me internalizing that shame.
Now as an adult, I’ve come to realize a lot of things that were missed by this doctor in particular, one of them being immense neurodivergence. And while the world of intersectional diagnosis and mental health as it relates to chronic illness didn’t exist as strongly in the 90’s as it does today, the fact that my life unfolded as it did as a child and no one thought for a second that I wouldn’t have long term consequences continues to baffle me.
So in this past in classroom session for my training program, I began weaving the pieces of my own story together as they involve adhd, expressions of trauma and the nervous system.
The nervous system is something that fascinates me, and I’ve spent a good amount of time studying, as well as I have and have worked with various disorders relating to the nervous system. One of my teachers has described this as biological and genetic expressions as opposed to disorders and I tend to agree. In my own lived experience, a lot of the “disorders” and/or symptom clusters I presented with followed an immensely chaotic time in my life that would have, no doubt, completely shaken my nervous system and ability to regulate. No one asked about that (in the case of GSD it seems everybody was too busy playing whack-a-mole with everything else and there wouldn’t have been an easily accessible, better option) and there exists this vicious cycle in medicine where more interventions are given to combat the side effects of the first intervention and we’re treating symptoms rather than people. If we look at other things that affect the nervous system’s ability to regulate, and the expression of things like ADHD, they include things like lack of sleep and hypoglycaemia. I, who endured severe hypoglycaemic episodes nearly every day for 20+ years and had not slept through the night maybe ever until I was transplanted.
Living with Glycogen Storage Disease was hell, and it was not I who failed the system but the system who failed me. The system that believes things work in isolation, that the effects of one thing wouldn’t have huge consequences in another area. And there’s a thread through all my work, as I’m doing this deep dive into transplantation and somatics, that is reaching back for the little girl I was lost in the world of GSD and trying to do better for her, for all of us, so the healthcare system understands the deep levels of stress and trauma this inflicts.
The effects on the nervous system are something I rarely see mentioned in medical settings, and with a rise in nervous system and autoimmune disorders I wonder why (I could speculate why, but that leads into a whole different conversation). A body under that level of stress will speak via sensation. Collectively as a society we’ve medicated and masked these symptoms, and labeled the behaviours as disorders. We’ve pathologized this very human experience, and the actual wisdom of the body. And I can’t help but wonder who are we failing when this happens? And when will we do something about it?
