Klippel-Feil Syndrome Blog

What is pain’s language if we decode it? Could pain be more than just physical? Where does pain sit in reality? What if longstanding pain is a flag and not a flaw, symptom or signal? What is the pattern? Can we choose protection over numbing? Can we choose to honour our signals with boundaries?

Questions again! So maybe we need to integrate the pain to feel less pain, by even just starting to listen and accept the pain signals. Maybe just by listening to our pain regularly can reduce the noise of it so it doesn’t have to shout for us to hear it. In rare syndromes/diseases, the pain can often be misnamed and mistreated with misunderstanding to the point of more physical trauma than gentle guidance. The mistreatment can be subtle but it dismisses, minimises and gaslights a persons experience into ignorance, which then causes ignorance within the patient towards themselves. Maybe if we start to treat the body like a puzzle, but not one that is cracked open like a safe, guarded or forced into alignment with textbook training. We cannot force our bodies to be silent when its screaming out for someone to decode it and listen to it. Then we can adapt to it, instead of taking the pain as something to carry and weigh us down, we have to open ourselves up to the possibility that the pain of the individual is a signal to be honoured and recognised, so that human may start to heal and be one with their pain rather than being at war with it.

What is it that can shift clinical rituals when a patient knows more about their condition? Could we maybe remove the elephant from the room to widen space to listen, but not just listen with trained medical ears but to listen with curiosity, not to surrender all authority but just to deepen these care rituals. If a patient sees a clinician but the patient has become a witness and scholar of their mutation/disease/genetic defect what does the clinicians position become? Maybe by collaborating together and being a guardian of health to help the patient understand themselves so they don’t feel left, abandoned and ignored.

Could listening to a well-informed patient be a form of professional refinement, not a threat, a chance to evolve our thinking towards the way in which care is offered and presented. Is it possible that some patients, especially those with non-textbook syndromes/diseases know more, not because they want control but just for the simple fact they have had to survive through experiences that textbooks do not cover. Being in the dark without even a medical opinion to turn to is a lonely and if not one of the most loneliest places to exist, knowing there is something wrong but not being taught to look further in and listen , or even just to feel safe knowing the possibilities of where the pain and symptoms are coming from.

What would happen if this knowledge was met with curiosity instead of resistance. Our species is changing in the corners of humanity that we cannot just ignore anymore, by ignoring the rest of humanities pain, we ignore the very centres ourselves, which could be slowing down our evolution.

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(POST 8)