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Chronic diseases


Silence is golden

We all know the adage: no news is good news. So I suppose it would be understandable to assume, from my silence, that I am fighting fit these days.

After all, I have been incredibly quiet. Well, not so much on a real live level, but on my blogging stage, I have been decidedly mute. For rather a long time.

So why now?

In truth, there is no single reason for letting my blogging habit slip. It certainly isn’t that I have abandoned my belief that there is a desperate need for more honesty and openness regarding illness. Quite the contrary, for a long time, I was focused on a collaboration to produce the documentary short we finished last Summer.

Nelly : The Elephant In The Room – so called after this blog – was originally meant to be a full feature documentary holding Inflammatory Bowel Disease, and the impact of living with it, in the spotlight. Thanks to the generous donations we received from friends and family, we were able to raise enough money to make a short film. However, it seems IBD still isn’t quite a sexy enough cause to generate significant money on Crowd Funding platforms and our ambitions for a feature length piece were curbed.

For the time being at least.

That said, the Isaac Films and Inspire by EG. partnership was a great one. With independent production consultant, Rob Gerrard, supporting us creatively, Jonny Dixon and I were able to create something we are both incredibly proud of. From the germ of an idea over coffee, a raw and honest short film was born.

From The Cutting Room Floor…

Of course, not everything we gathered and shot could make it into the final film, but we were overwhelmed by people’s willingness to share their own stories and experiences. We even managed to track down my very first paediatric consultant – Dr. James Littlewood – the trailblazer who was responsible for diagnosing me way back in 1985, at the tender age of three. The Skype interview with him was insightful, enlightening and more than a little bit emotional.

In fact, the whole thing was quite a cathartic process for me. I found it refreshing to speak to so many other people, with and without illnesses of their own, who wish we could live in a culture of more ready acceptance regarding disability.

I will admit that it was all-consuming for a while – my professional and personal lives suddenly colliding in the most unexpected of ways. Two worlds I have strived so hard to keep separate so as not to be defined negatively by colleagues, or seen as less able to survive in such a competitive Arts world, coming together and becoming completely entwined.

Reflecting On The Challenge

In hindsight, maybe I struggled more than I anticipated I would, with just how exposing the whole process became. Perhaps afterwards, I needed to take a break. It is possible that somewhere, deep inside, I actually craved a return to the time when my hidden disability was exactly that – hidden. From the rest of the world, at any rate.

Maybe I just wanted to put aside the with chronic illness part of living for a while.

The Clue’s In The Name

In reality, we all know that’s easier said than done. While I am certainly in comparatively much better health than when this blog began, the very nature of incurable illness and chronic conditions such as Crohn’s Disease, is that they never go away.

My good days are still a long way from normal. The first thing I do in the morning, is pop a handful of pills. The smallest of tasks can exhaust me, I face a daily battle with the heavy purple rings round my eyes and my immunity is particularly fragile at this time of year. Peculiar rashes, migraines, insomnia, nausea and fatigue are all run of the mill. Some days, it is an effort just to get up, let alone slap on my painted mask and face the world. I have still never experienced a day that is entirely pain free.

And all that is fine. It is my reality. It is my norm.

But maybe I wanted to take a break from focusing on that and broadcasting it all to the masses. Maybe, without the tube embodying Nelly and guaranteeing that everyone could see the illness I spent the first 35 years of my life hiding, I decided to press pause on shining a light on the harsh realities of living with IBD.

Life Beyond Illness

It is probably no coincidence that this break also happened to coincide with a particularly happy period in my life. A fair bit of my time and energy was being invested in my blossoming romance – the bolt from the blue which flip-turned my life in a flash. I was busy enjoying being swept off my feet, planning a wedding and another cross-country house move. All of which accounts for my even sunnier demeanour these days.

Let’s not forget the on-going professional juggling act of projects and creative endeavours across a bigger Geographical plane.

In true Emma fashion, the longer I didn’t write for, the more I berated myself for not writing.

So Why Now?

I suppose that brings us to today. The here and now. The drive and desire to return to my platform.

I have finally unpicked, understood and accepted my reasons for the hiatus. I can’t separate myself from my elephant, but, not having the tube gives me the luxury of being able to conceal it from the world occasionally – even in my newfound age of transparency. So I am giving myself permission retrospectively. I think it’s okay that I took a breather. I think it’s alright that I stepped back for a while. I think it’s perfectly acceptable that I gave myself an undeclared sabbatical from blogging about illness. I think, in this instance, the silence has been golden.

In fact, I would go so far as to say that it better equips me to pick up my virtual pen and get writing again; I am refreshed now. Recharged and ready to publish my musings on the world wide web once more.

To avoid disappointment, I will make no promises as to the regularity of said posts. Instead, I will say that I am back to let you in and share with you again the ins and outs of living with chronic illness.  

In the meantime, if you haven’t already seen the film, pop over to the homepage and watch it there.

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