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Bringing life and chronic illness together through creativity

Because living with Crohn’s Disease is, for me, Just : Living

Since my diagnosis with Crohn’s Disease at the tender age of 3, I have made it my aim never to be defined by my condition. For someone living with chronic illness, the illness often becomes the elephant in the room. Nobody really wants to acknowledge it, let alone have a conversation about it and I think it is time for that to change.

Having spent most of my life hiding my elephant, the bombshell of needing a naso-gastric feeding tube at the end of 2016, left me terrified of what people would think.

At the age of 35, I didn’t want to wear my illness on my face. I hated the thought of people knowing how ill I was, simply by looking at me. That people would see through my best ‘I’m fine’ performances worried me. The thought of people suddenly catching on how underweight I had become terrified me. Desperate to avoid pitying glances, the thought of people staring made me feel sick.

In retrospect, I suppose all that was to be expected.

So what?

My fear became my motivation to start blogging, in the hope that it would help me regain some of the control I was about to lose. Writing would allow me to share the details I wanted to share on my terms. There was no way for me to stop the world from seeing my elephant, but I could control how well they got to know it.

Somewhere along the line, it struck me that if I named my tube, I could try to befriend it; Nelly was born.

The amount of positive feedback I received for sharing my truth and being more open about my disease came as a total shock. As did the amount the blogging process would teach me.

Only when the tube came out, 17 months later, did I realise that it wasn’t the elephant, my Crohn’s Disease was. I’d been living with it all my life and now it had a name – Nelly.

Through blogging, I taught myself to sit beside, instead of run from Nelly; to live with, not in spite of Nelly

Let’s talk…

I had finally learned to understand the difference between not grumbling about the existence of my condition, and actually accepting the part of myself that I like the least. It is a continuous process and Rome wasn’t built in a day, but by talking about the elephants we live with, we make it okay for them sometimes to take up more space than we’d like them to. 

If we just talk, we give other people permission to ask questions about things they don’t understand. If we are honest with ourselves, and the rest of the world, about what these hidden disabilities mean, we can help to take away the stigma.

So I promise to continue talking about living with chronic illness – because for me, that is actually just living.

Appearing on Look North with Amanda Harper in 2018.

Spread the word…

Nelly: The Elephant In The Room is a Documentary short I made in 2019, in a pre-COVID world, with the wonderful team at Isaac Who.

Inspired by the Crohn’s and Colitis UK’s #ItTakesGuts campaign, we were very proud of what we managed to achieve, and very grateful to all who helped make it possible.

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