We’ve all walked a path to get us to where we are today. Like yours mine has been full of twists and turns and been challenging to navigate. But I am grateful for my journey as it’s where I’ve learnt my strength and grit.
My childhood and teens was spent in and out of hospitals and back and forth to the GP, sometimes unable to walk, sometimes in pain, sometimes just so tired I couldn’t lift my head off of the pillow.
No one ever knew why, and slowly I gave up trying to find out. It got to the point that, unless I really had to (usually because I really couldn’t relocate a dislocation) I never went to the hospital or doctor. I just got on with it, hiding from the fact that my body was actually falling apart. Pretending that it was OK not to be able to do the normal things that my friends could do. Convincing myself that I could manage the pain every single day, and hide, even from my husband, that I couldn’t keep my eyes open past 4pm every day.
But then I had my first child, the naps just to get through the day when no one was looking had to stop right there. And, I found myself unable to walk after giving birth without so much pain that I wanted to cry, or scream, (or both). I was knackered and the more I tried to pretend that I was OK the harder it was and the more sick I got with it. My usual coping strategies didn’t quite cut the mustard.
This was the point of my first big diagnosis, Charcot Marie Tooth Disease (side note – it’s nothing to do with teeth) and this one floored me. Whether it was the hormones or the uncertainty I’m not entirely sure. I just second guessed everything, constantly re-examined my life and my future. Then, when two more surgeries followed in close succession I had to admit to myself that my career in teaching was probably over too.
Life spiralled. Outwardly I was still that same person but internally my mind was a mush, like a swan on the surface but frantically paddling underneath just to try to stay afloat. I lived… but in a blur.
Who was I now?
Over the next few years more children brought me joy followed by more diagnoses and surgeries which brought me worry and strength in equal measure – Ehlers Danlos syndrome, Postural Orthostatic Tachycardia Syndrome, a hole in the heart… blah, blah, blah…. Labels schmabels.
Growth is painful. Change is painful. But nothing is as painful as staying stuck somewhere you don’t belong – unknown
Slowly I learnt, I trusted, I talked, I became empowered and I focussed on what I could do not what I couldn’t. I found work arounds for things to make my life easier. I began to own It.
And, ultimately, I changed my mindset.
Most importantly and life-changingly, I learned how to not let my chronic illness, which had been the focus for so many years, become my story—the story of someone who shirked away from her own life because she was diagnosed with this stuff and the world now owed her something for giving her that to carry.
Because guess what? The world didn’t owe me anything, and the world doesn’t owe you anything either.
We are all victims of something that has happened in our lives. We torture ourselves with things that were said or not said, and about what happened or didn’t happen or things that haven’t even happened yet. Reacting to things a coiled spring, raw from experiences and situations that lie well in the past. And yet by doing this we are allowing our past to build our future.
It’s the reason that you make so much meaning out of things, constantly wondering what people are thinking. When you’re work mate says that you look great today you immediately wonder if they believe that you are sick at all. The reality, she thinks you look bloody amazing despite having a chronic illness to battle each day.
So, here’s the thing. There’s what happened and there’s our story about what happened, and assuming the two things to be the same is the source of so much pain and unnecessary self-suffering.
You see, I don’t even recognise that 26 year old teacher paralysed by the loss of her career anymore. We only have one life. And yet we have lots of choices about how we can live it. About how we take what has happened to us and what we do with it from here on in.
We can become so wrapped up in darkness and negativity, blaming everyone and everything, our circumstance, or we can take from what has happened and learn something about ourselves.
And now, writing this, decades after my first symptoms, I feel grateful. Not that I have these weird and wonderful conditions, or that I have passed them on to my children (definitely not that), but that amidst the heartache and the grief and the loss, I found out who I was.
And I did so because I made a choice. To rewrite my story. Be brave enough to know how important it is to invest in my own happiness and wellbeing. To not just be the girl who has all that crap wrong with her. But to be the woman who chose to decide that her future is bigger and better.
And with me by your side, so can you…
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