Field Notes - Autoimmune betwixt and between, self/not-self.
Boundaries, liminalities, in-betweens. Self-knowledge, Self-image, Self-access. Some readings across psychology, neuroscience, somatic education.
The body sometimes feels less like itself than other times. Neuroscientists are measuring that. The cytokine-mediated drift that Costantini opines, it’s a widened temporal window of multisensory integration, proprioceptive uncertainty, affected regions that feel less owned by the self.
The rubber hand illusion is a classic experiment: you hide your real hand, put a fake rubber hand in front of you, and someone strokes both at the same time. Eventually your brain starts treating the rubber hand as if it belongs to you, your sense of where your real hand is actually drifting toward the fake one. How strongly this happens varies a lot between people, and nobody really knew why. Researchers found a piece of the answer: people with an autoimmune condition feel the illusion more strongly than people without one. Their brains more readily incorporate the fake hand into their body representation. The proposed reason is biochemical, of course. The same inflammatory messengers involved in the immune response also affect how the brain integrates sensory signals. When those cytokines are chronically elevated, the brain’s window for deciding “this sensation belongs to my body” stays open wider. The boundary between what counts as me and what does not is, at the level of tissue signaling, more permeable.
Reading that research gives me shivers. What does it imply about how we discern boundary? What does it mean that we feel so porous?
This permeability has been framed as a problem. The immune system’s core function is discrimination: self from not-self, threat from terrain, the familiar from the foreign. When discrimination falters, the clinical frame reaches for error. The body attacking itself. The self that has mistaken itself for enemy.
A destabilized boundary between self and not-self makes that boundary visible in a way the stable, bounded body never experiences. The autoimmune body arrives already positioned at the threshold that somatic education spends decades teaching people to reach.
Psychology has spent decades showing that much of what we think we know about ourselves, we don’t. In the classic studies from the 1970s, people could not accurately report why they made the choices they made. They confabulated reasons, reached for plausible stories, and sincerely denied the factors that actually drove their behavior. A vast set of mental processes handles perception, motor learning, implicit attitudes, social judgment, all of it running below awareness, never surfacing. We figure out our own attitudes largely the way a stranger would, by watching what we do. And we suffer from a systematic blind spot: we trust our own gut sense of ourselves deeply while dismissing everyone else’s, and we find no evidence of bias because bias operates below the level introspection can reach. The self, in this view, is a story assembled from scraps: partial data, observed behavior, gaps we fill without noticing. The strangeness is adaptive. Consciousness would overload if it had to process everything the unconscious handles. The limits are functional. This is how self-knowledge works, and it works fine, mostly.
Somatic education arrives at a parallel conclusion from the other direction. Feldenkrais’s foundational claim: the self-image is a body image, the integrated whole of movement, sensation, feeling, and thought as they organize themselves in a particular nervous system. And it’s plastic. It can be expanded. Lie on the floor and make a movement so small, so slow, so far from habit that the automatic motor program cannot run. At that moment of unfamiliarity, consciousness must intervene. What was preconscious body schema becomes available to body image. The implicit becomes explicit.
Thomas Hanna named the automatic pattern “sensory-motor amnesia”: muscles held in chronic contraction below the level of voluntary awareness, the sensory-motor cortex having surrendered control to subcortical reflexes. His method: voluntarily contract those muscles fully, then release them slowly enough that the cortex registers the change. The goal is restoring what had gone underground to conscious reach.
There’s a man known in the research as IW. He lost all proprioception from the neck down: no sense of where his limbs are in space, no tactile feedback. To move at all, he must substitute conscious visual monitoring for the automatic body schema that no longer runs. He has to watch his body to know where it is. Somatic education does this voluntarily: it brings schema into image so that making it conscious allows reorganization.
The autoimmune body lives at the intersection of these two ways of knowing without having chosen either. Our immune system processes vast amounts of information below awareness, discriminating, remembering, responding, a version of that unconscious processing running at the molecular level. The immune self is an ongoing process of self-definition. It knows itself by continuously constituting the boundary between what belongs and what does not.
When that boundary becomes unstable, when cytokines alter multisensory integration, when affected body regions feel less owned, when the internal signals that normally anchor the sense of being a body become less reliable, the autoimmune person is forced into the position that somatic education cultivates deliberately. The body image must be actively maintained. The body schema can no longer be taken for granted. What the stable body leaves unconscious, the autoimmune body must negotiate.
This is the fulcrum.
I cannot avoid the question of what is me and what is not me. For others, the question is philosophical, occasional, safely academic. For this body, it is continuous, practical, negotiated at the level of tissue. Every flare asks the question again. Every remission gives a temporary answer.
Anthropologists have a word for this: liminality. The state of being betwixt and between,, neither here nor there, suspended between established categories. Chronic illness researchers have mapped this territory in chronic pain, in cancer, in HIV, in fibromyalgia: people caught between sick and well, visible and invisible, diagnosed and not. Autoimmunity adds a layer that most other conditions cannot: the mechanism of the condition is the mechanism of self/not-self discrimination. The threshold is simultaneously a social position, a phenomenological state, and the biological function that has become a question.
From this position, certain things are visible that remain invisible from the stable center. Somatic educators may say: make the implicit explicit, and the self-image can reorganize. A psychologist may say: much of the self is structurally implicit, and this is functional. The autoimmune body lives both claims at once. The permeability that somatic practice cultivates through slow, attentive movement: I arrive with it. The self/not-self questioning practiced on the floor, I practice in tissue, continuously. The condition placed me here.
From that position, self-knowledge is something the body does. The flare is the body’s signal made visible. The remission is a temporary stabilization in a system whose boundaries are constitutively negotiated. The self is an active, continuous, tissue-level process, made and remade at the boundary. The fulcrum is the place where that making becomes visible.