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WHAT’S THE STORY?

As Crohn’s and Colitis Awareness Week 2021 gets into full swing, I find myself even more reflective than usual. With the tagline Your Story Matters sufferers are being urged to speak out and share experiences. So I ask myself: what’s the story I want to tell?

image courtesy of Claire Bartfield photography

GOING PUBLIC

In 2018, I was interviewed by Amanda Harper for Look North. That was the first time I had ever spoken so publicly about my condition. As you know, I find it much easier to be open these days, than when I was growing up. In the eighties, people couldn’t really cope with conditions that had the word disease attached. There was stigma around anything which made a person different. I can remember one of my best friends from junior school sobbing in the cloakroom over a dyslexia diagnosis. She was terrified it would put a target on her back, mark her out, make her fail.

(It is worth mentioning here that said friend has gone on to do great things with her life and needn’t have worried at all.)

FIRST CHAPTER

So, is the first chapter of an IBD story the one where diagnosis happens? If that’s the case, I can’t remember. I was 3 years old and far too busy falling in love with the stage to pay attention to what was going on with my body. Or does the story begin when a person accepts their illness and all it entails? Personally, I think there are quite a few messy chapters in the mix before that point. Is the direction of the story pre-determined by the severity of the illness? I am much more a fan of the idea that we choose the direction according to how we handle our condition?

In fact, I don’t see why we can’t just make it up as we go, the way everybody else does?   

PEN TO PAPER

I first put pen to paper about life with Crohn’s Disease around December 2016, when my naso-gastric feeding tube was put in. This was already three and a half decades into my story, and a long time after I begun writing. Looking back at one of the last posts I wrote just before that defining moment, my focus was all about positivity and inner sunshine. That post, Staying Sunny, was picked up by another IBD website and published as a motivational piece for people struggling.

It wasn’t written as a how-to nor was it intended to instruct others. Rather, it was my own musings on my apparently impossibly sunny disposition in the face of a great deal of adversity. It was really penned as my answer to the question I was most often asked – how do you stay so sunny?

LABELS

Sunny was everyone else’s label for me – the quality people assigned me when I was just a dot. And it fits. I am positive. I do try to stay bright. And, when the sun isn’t shining, I do my best to make my own rays.

All that aside, it was still a label I was given.

I read something recently about toxic positivity. It was the first time I had ever heard the term so I was, naturally, curious to explore. How could something positive possibly be a bad thing? Where does toxicity sit in line with positivity? As oxymorons go, it’s a pretty puzzling one.

The definition of toxic positivity is: dismissing negative emotions and responding to distress with false reassurances rather than empathy. Other articles go on to talk about it as an obsession with positive thinking and a belief that however dire a situation, a positive mindset should be maintained.

DANGER ZONE

I had never thought of a positive outlook as being dangerous. My dad and I always used to remind each other to keep PMA – a positive mental attitude. It was our good luck shorthand when either of us had something big happening. We used to say it three times in unison. Then laugh at the silliness of the ritual.

Looking, again, at the definition of the term, I can see qualities I recognise from many chapters of my story. All too often, people feel a need to placate, to make better, to advise, to console. All born out of love and kindness, to call this toxic is unnecessarily damning. That said, it can sometimes be less constructive than it is intended to be. Most of the time, people don’t have a crystal ball to know that everything will be okay. Nor can they see that things will work out in the end. It is rarely useful to be told that things happen for a reason when we are at our lowest point.

I suppose, thinking about it, there is a very fine line between healthy positivity and so-called toxic positivity. In some ways, I would say I probably used to ascribe to a more toxic form of positivity. I would habitually deny the possibility that I was ever anything less than fine. I would dismiss anything vaguely resembling negativity, never allowing myself to entertain the fact that I was struggling.

WHAT WAS MY MOTIVATION?

I did it to make life easier for everyone around me. So many people have always struggled to know how to behave when I am anything less than okay. I have been known to give the ridiculously implausible response to visitors: I’m fine thanks when lying in a hospital bed with tubes and wires and machines beeping away. A quick dismissal of reality in order to focus on someone else’s narrative for a while.

Obviously that is a somewhat extreme example, but you get my point. I can’t turn back time to unpick fully my rationale from years gone by. (I’m not sure I’d want to if I could.)

It is safe to assume that there was more than just a smidgen of self-preservation in the mix. If I could convince everyone around me that I was okay, I could also fool myself into believing it. PMA. Mind over matter. When the tube went in, and I began wearing my illness on my face, I could no longer pretend. Although it didn’t stop me smiling for the outside world.

THE OKAY SCALE

Taking between 5 and 20 tablets on a morning just to function and keeping pre-filled syringes in the fridge in our garage, you could argue that I am never really fine. Never having experienced a day without symptoms of some sort – be it pain, severe fatigue, joint weakness, irritation in my eyes, skin rashes, mouth ulcers like craters, sores in my nose, nausea or any combination of the above – it is fair to say that my baseline is not the same as everyone else’s. So I will readily admit that my version of okay doesn’t necessarily meet the standard definition of the word.

I suppose it’s something of a sliding scale; I can veer dramatically from one end to the other all within the space of a single day.  

STILL MY M.O.

On a day-to-day basis, I still follow my positive principles. I imagine I always will. I am, after all, still the same Emma I have always been. Still determined to live as full a life as possible, despite this nasty condition. Ever resolved to keep my story bright.

It will always come more naturally to me to tell people I’m fine, thanks than to launch into a catalogue of my aches, pains and general struggles.

I think that’s okay, though.

SO WHAT HAS CHANGED?

These days, I have a healthier approach to positivity. I make a choice to stay sunny rather than feeling an obligation to do so. I am no longer burdened by the pressure to be okay for everyone around me. Those closest to me will often ask a second how are you? indicating that they want the real answer. For those trusted folks I will usually give a hint at how things really are. Even just a nod to the fact that I’m having a tough time right now or I haven’t been feeling great lately is, for me, a massive change. 

I suppose the biggest change in my thinking is that I now readily accept that it is okay not to be okay. With that in mind, I give myself permission to be however I am on any given day. I give myself permission to be real, no longer exhausting myself by putting on a front.

I’m sure you’ll all agree, that’s a fairly big deal, but not one that changes my story.

This Post Has 4 Comments

  1. Leila Sandler

    Emma you are amazing and look fantastic,

    1. Emma Baim

      Thank you, Leila. Very kind of you to say so.

  2. Judith Gordon

    Of course, I remember it all very well, and I will never cease to marvel at your courage and positivity. You are an inspiration to anyone living with a disability.

    1. Emma Baim

      Thanks, mum. Although you might be just a little bit biased. x

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