My tears are all spent.
My chest heaves but there is nothing left but desperate air.
I am wrung out.
Emotions have tipped upside down and my souls contents are spent.
I feel empty.
I acknowledge it’s been a cathartic journey but I have nothing left but the breath within my body and a comforting beat, from my steady heart.
My Duvet seems the only viable option right now. I’m not really sure what else is left for me in this moment.
The world is going on in the background, with an innocent vitality and coarse humour but I can only listen to its chirping white noise, as a backdrop to my own expanding void.
A touch melodramatic…yes but I feel a little melodrama goes a long way when one is hurting…that and a bowlful of warm, cheesy beans.
It turns out…
I have Behçet’s disease.
The villainous autoimmune disorder, has finally been unmasked and it’s dastardly deeds named, shamed and brought to trial.
Apparently it’s been causing mayhem for the majority of my rollercoaster life, running secretly in parallel to my recently understood (6 years ago) Dysautonomia (EDS/Pots/Gerds/IBS/VasoVagal Sycope/hemiplegic migraines/ Big bag of Crazy) yet hidden just enough, operating as a secret, undercover terrorist, in and amongst my other symptoms. Going unnoticed all these years, until it’s recent crime spree has brought its identity finally to light.
And a part of me is celebrating…
I acknowledge this seems a bit weird! But when you spend a lifetime being haunted by a ghost, it’s nice to eventually know it’s name.
I also have never understood why my Dysautonomia has been, slowly becoming more dramatic over the recent years and extreme in its floorshow performances.
I’ve secretly wondered if it was me and some hidden need for the spot lights and accompanying attention?
Hot footing between the secret fear, this is all being caused by me and the worry that maybe I’m losing it entirely or the alternative fear, that it is in fact real and it’s now slowly robbing me of my ability to play an active role in my own daily life.
So yes, knowing it’s name and not only that, but having a magic tablet -Colchicine- to help manage its affects, has been life changing…🎉🎉🎉
It has also brought confirmation to my soul that I am in fact, not actually mad (still bonkers yes…but more in an ‘Alice in wonderland’ way, rather than the darker, sadistic Jack Nicholson portrayal of the ‘The Joker’, kinda way).
30 god dam years…I have secretly believed that I was a nut job.
Some clever, psycho genius, capable of manifesting this elaborate performance, to amaze and protect me from harm, rejection and some sick need to play the role of the century…the perpetual victim!
I have been in conflict with myself for a lifetime.
Waring between my internal light, my hopes for my super ego and the fear, that my inevitable darkness was conning us all, with its vampirish desire for attention and energy but it turns out that my ‘Sicky Kathy’ story was created and based upon a lie.
What do you do, when you realise your story, your identity, your coping systems, lifestyle choices, hopes and fears were an elaborate hoax?
A lie whispered to me by my doctors, my peers, teachers, family members and friends…those who just could not understand, the box-less child.
“No one can have all of that wrong with them at one time…the tests are clear, we can’t find anything, it doesn’t fit the tick boxes we have, it must be in her head, it must be her, she’s broken…she’s the one who is bad…she’s the one, making us give up our time, causing us stress and heartache, she’s so unreliable…she’s choosing to be the burden.”
And I believed it.
I didn’t understand, I was 8-9 years old when it all started, I am 40 next year. When the professionals, the grown ups, the authorities label you as dysfunctional, society believes it. You have been stamped by the gods, so it must be true.
Yet I made no sense to myself.
I didn’t feel as though I had any control over this monster that lurked within me. It couldn’t be me…could it???
No way of calling him out, looking him in the eye and banishing it from my life, our lives.
I didn’t want to be sick, to be in pain, confused, dizzy and throwing myself down the stairs, upon the mercy of my peers.
I didn’t think I had chosen to miss out on making friends and sharing in that companionship, the trust, the laughter and the adventures of school. Landing face down onto the wet, cold and dirty tarmac, on my way home from school. Lying sprawled out, unconscious next to a busy main road. My skirt landing over my head, my knickers on show to passing traffic, with no physical way of protecting my modesty, instead relying upon the kindness of strangers to rescue me from my shame.
I don’t believe I wanted to wake up alone, in the dark, in the cold, not knowing how long I had been there and if help was ever coming, my head banging, my limbs unresponsive and nothing but the comfort of my ambling mind to soothe my fears.
I know I didn’t choose the thousands of needles that have been jabbed through my body, the humiliation of test after test,defecating in front of strangers (on a bloody platform no less!!) condoms inflated up my arse, by attractive young doctors, tormenting my teenage, vulnerable heart (testing for Chron’s disease or something else…I forget)
I didn’t choose, being incapable of carrying my babies to full term, experiencing the near loss of my life on the operating table and the consequences of condemning my son, to a life with cerebral palsy because I was unable to cook him properly.
So yes, I perceive this as a great gift to sense of self. My own inner knowing.
The gift of knowing Behçet’s name and it’s tendrils of consequences upon my tormented body, has freed my soul from my own damnation.
I secretly believed I was bad.
That it was somehow me all along, somehow…broken, twisted, needy…and I have been forever ashamed, with the shackles of guilt, incredibly heavy to bear.
It has bound me.
Bound my voice from speaking my needs.
Bound my tears from falling unencumbered.
Bound my wants from demanding an answer.
Bound my heartbreak from seeking its comfort.
Bound my trust from embracing true friendships.
Bound my boundaries from rejecting poor friendships.
Bound my ego from celebrating my gifts.
Bound my ego from accepting my weaknesses.
Bound my grief from asking for acknowledgement.
Bound my pain from seeking relief.
Bound my anger from requesting justice.
Bound me from true, honest and authentic acceptance and love from myself.
Bound me from peace’s loving embrace.
Guilt, shame and fear have been my secret companion this whole journey. Where my feet have trod, their shadow has fallen.
Every decision I have made was in defence of this lie. Trying to prove them all wrong but secretly believing they were right.
I have found my voice and I say now, that I reject this shame.
I have chronic ill health and I am legally disabled.
My body struggles with Dysautonomia and Behçet’s disease and will continue to do so until I die but no longer will I carry the guilt of their effects upon my life and those who choose to share it with me.
So I choose instead to release the past.
I’m going to create a new story…find my authentic truth and uncover the person I was born to, be before my tale became distorted within my mind.
I’m not sure I know where to begin???
I forgive the misjudgements.
I let go of the hurt of rejection, the whispering mockery from those who I named friends, from the doctors within whom I placed my trust, from the loved ones I had hoped, would protect me, providing sanctuary for my frightened, hurting, child self.
I make peace with the miscommunication and the relationships that got lost along the way.
And I accept the child, that at times, used the identity of my health to her own gain (there were days I could have gone to school but wanted to watch Rugrats instead 😳).
I’m going to be okay.
The journey is far from over but at least I understand the road.
Thank you for bearing witness to my tale.
Thank you for hearing me ❤️