Klippel-Feil Syndrome Blog

Welcome back my lovelies. Today feels different, not chaotic but gently uncomfortable. I am writing because i know there has to be a way to build more connection. I am writing because it is necessary, it is truth and it needs to exist. So this post is a quiet lighthouse, a subtle flare, to those reading who feel out of place on this weird and wonderful planet, the ones who feel alone in being a rare bodied human. To you reading right now, we are still here, we are still trying and now is the time to connect.

This is the ECHOHEART PROJECT.

I started this blog to make sense of things, the rare anatomy, yes! But also shape the quiet emotional patterns that shape life. I have stood in rooms built for policy and sat with truths no policy could hold.

A long time ago, I was Crystal-Lily mills, a Member of Youth Parliament for Dorset. I spoke about things that hurt the whole of society, domestic violence, youth poverty and safety, not because I have answers but because I was living through those very questions. Through personal and political experiences, it has shaped my understanding of trauma-informed advocacy. Though back then I didn’t have the language, but I was ritualising pain into public protocol. I am still Crystal-Lily. But now I speak from both wound and the wisdom.

Last night I remembered her, for the first time in a long time, but really remembered. I remembered a girl who stood before 200 professionals and spoke about domestic abuse. She was 16. She is me and she is still here, slowly being uncovered, layer by layer through the dark tunnels of rare and isolating pain. I assumed I was bad, I saw the world through my parents engrained fear and paranoia, but these were not my eyes, vision, nor the weight for me to hold, a borrowed set of lenses that were fractured through others choices and experiences. Slowly I began to see differently. Not just because i started to heal but because the healing cleared room for clarity, which then led me to purpose. I helped redesign foster care materials, not as an expert but as someone who was living in those very gaps of society where souls get lost, sometimes never to return. I stood at Tolpuddle festival, not to be seen, but to honour those before me, our ancestors. I led youth council workshops on equality and confidence, offering what I could from a place of rupture and burnout, not perfection. Being able to articulate others needs with precision, but when it came to my own pain the language of it completely dissolved into emotional reckoning. These moments never fixed me, but every single step I took led me to a mirror, revealing and facing those very parts of myself. The good, the bad and the ugliest versions of myself that i had created through fear, survival and the words of other people. But through all of that the hardest reflection to stomach didn’t even turn out to be the one i was scared of seeing the most, that i was broken and unfixable. It was the realisation. I used to think i was a “bad or negative human”, not because i did anything wrong, but because i couldn’t make sense of my own pain. Now I know there is no split between “good” and “bad”. Everything is mixed. Pain doesn’t make you cruel. Cruelty is a choice. I did not want to make the same choice as those before me anymore. Survival doesn’t make you selfish, it makes you adaptive. I was not bad, I was becoming. I realised that maybe even back then what I carried made me feel “bad” but actually I was fighting through cement while trying to please. I just couldn’t see properly through second hand traumatised glasses.

There were emotional truths that i couldn’t and i wasn’t ready to see or embody at the time. It was hard, I was heard but not held. I felt like i was carrying the lighthouse on my back, trying to guide others while still lost in the foggy darkness of survival. Now i place that lighthouse down. Not from a place of burden, but as beacon. So that those who need it can find their way and maybe, just maybe not feel so alone on this planet floating through space.

You are not the same, but you are. Maybe you bent until you broke too. Maybe you gave away parts of yourself just so someone else had enough. I did too, I performed versions of myself that were not mine. I met the needs of others that were not mine to meet. I distorted my inner-power and energy until it no longer felt like energy or inner-power at all. Just depletion, if not the edge of personal deletion. Along side the experience of pain, not poetic but the pulverising type of pain. But pain is now forging my path. It has taught me where my edges lay, it has taught me what is mine and what is not mine. I haven’t started over, I am starting a fresh. I am rebuilding, not from scratch, just from truth. MY power to return, undistorted, as I started calling it back in, it didn’t become louder, just clearer. Not new, but mine. I hope that maybe as you read this. you will also feel your own ember start to flicker. The light I now see in myself, I see in you, the one that refused to die. The one that is ready to rise.

I was in an accident when i was 14. They did an X-RAY, but no formal diagnosis. Just, ” We don’t know what it is, but you will probably be in a wheelchair with arthritis in your spine by the time you are 40″. That was it, no follow-up consultation. No explanation. Just a sentence handed to a child. My inner health got even more lost alongside the life I knew when I went into foster care. From there, I was left to try and translate my pain. But it didn’t work out, not then.

The truth is it started way before this first accident. The migraines, oh my goodness the migraines. They started when I was a baby. Being sent home from school, sometimes walking home with a migraine so fierce I could barely see anything. Calpol and a dark room. That was the protocol. No questions. No pattern recognition. Just diets. Removing things. As if subtraction could solve what no one dared to study. The tonsilitis that kept coming back, so many antibiotics. Without even a regard for what might actually be wrong. It was like they were trying to fix something without knowing what it was. I was a chocolate kettle. They didn’t see the chocolate. They just filled me with water, flicked the switch to boil, and called me dramatic when my nervous system reacted.

I saw a chiropractor when I was about 9/10 years old, she was lovely but you cannot help what is not known. I was migraine free for about 6 months but I ended up with leg pain as-well as migraines which nobody understood. (I am currently seeing a Mctimoney chiropractor, he listens and the treatment is very gentle. My body is extremely sensitive so it can be rather uncomfortable at times, but extremely relaxing in other times. I feel it is helping right now, recovery is painful but I feel more aligned. My body seems to be aligning and listening.) But after my experience with the lady chiropractor when I was a child nothing much was done.

Then when I was cycling home from work in 2018, I got into an accident on the road. I fell. I got taken to hospital. There was a doctor in A&E, a gentle giant with a beard, like a strongman contestant. He sat me down and said “I think you may have something called Klippel-Feil Syndrome”. So I was sent for an MRI. Took two attempts, I panicked so much the first time they had to pull me out, it was like I could feel the MRI in my cells, but I couldn’t translate this. Second attempt and I managed 20 minutes because my partner came in and stroked my leg so I could focus on just one spot on my body.

When i met with orthopaedics, they confirmed the incurable diagnosis. He referred me to a panel of surgeons, I patently waited for news of help. Nobody could help or was even willing to. So i was left on opioids and other pharmaceuticals, which caused me more pain than good, but with nobody to help I got lost in the darkness just getting the prescriptions every month, still hoping they would do something to improve my life. No map. No guide. Just me, trying to make sense of it all, but I hit 23.5 stone at my heaviest on medication from pharma. I was ridiculed for putting on weight, I was made to feel even lower. I went into the GP surgery after blood tests. Before even looking at the results, she assumed I had diabetes, because of my size. She didn’t ask. She didn’t check. She just presumed. What made it feel worse. She was about the same size as me. But her body wasn’t under scrutiny. Mine was. She wore her weight invisibly. Mine was treated like a diagnosis. This isn’t about her weight.
It’s about how mine was used as a shortcut to blame. They gave me pharma. I ate myself into oblivion. Out of shame and survival. And after that, every pain I named was met with one answer: “It’s your weight.” Not all professionals did this. But most did. Enough that I stopped expecting to be read properly. And then I went silent.

This is where it all started. The protocols. Not in clarity. In survival.

I shared this as a lighthouse for the ones still searching. This is my experience of KFS, and maybe just how scrutiny tried to silence it.

It needs to be spoken about. So I’m speaking.

What flame did you carry before you had the words?

What part of you is still waiting to be reclaimed?

You’re invited to respond, in comment, in ritual, or in whatever form your body trusts.

Pause Here: What version of you was built to survive? And what version is ready to live even if it is alongside pain.

If you find your answer, write it down, if you don’t that is okay too. The lighthouse has been lit now for you to go back when YOU are ready.

© Crystal-Lily [2025]. All rights reserved.
You may share or quote this work for non-commercial purposes, but credit me as the original author.
No part of this content may be used for commercial gain, republished without permission, or altered without clear attribution.
This is lived research. Respect it accordingly.

(POST 9)