Like any of the blogs I have posted about illness and Crohn’s Disease, this one is a scary one for me to write. However, it is also one I feel compelled to write, to play my part in the global campaign to raise awareness. When I asked for support on #PurpleFriday earlier this month, I promised that my blog offering would follow. And anyone who knows me, knows that I always honour my promises.

The trouble is, it’s hard to know where to start. The title isn’t really one that works. I mean, it isn’t seven days of inflammatory bowel disease is it? Seven days is just a week. Once you’re diagnosed with IBD, it’s a life sentence. And I don’t say that to be dramatic. I say it because it’s the truth. You see, for someone like me – a rarity in having been diagnosed at the age of 3 – I couldn’t write about seven days without IBD (or even one day without it) because I have no memory of that. How could I? I was a baby. So for me, the title is just #7DAYS: a week in the life. And I’m not really sure how it differs from anyone else’s weeks.

I make no secret of the fact that I refuse to be defined by the illness I have. So if I were to write about my week instinctively, I would present you with an account filled with anecdotes about students and stories of creativity and my latest project ideas. But I don’t suppose that would be in the spirit of this campaign. How can we de-stigmatise something if those of us with day-to-day experience and intimate knowledge of that something are unwilling to discuss it?

So I will play the game. I’ll try to give you an insight into how it is for me everyday living with, working with, dealing with an illness I used to try and run away from. I grew up not even whispering about Crohn’s Disease because it was my dirty secret. I couldn’t understand it, so how could I expect anyone else to? I didn’t accept it, so I was convinced anyone who found out would also take that position, ultimately meaning they would reject me. I didn’t want to be perceived as different because of a label that hung over my head. If I’m honest, I still struggle to accept my illness – that’s why I am on the go all the time. I am cruelly unforgiving of my own weaknesses, I am the first to chide myself for struggling with something, I have no tolerance for myself on feeble days. And as if to prove it can’t beat me, I do more than most healthy people would. I reject the notion that I am disabled, ill, an invalid.

But I am willing to acknowledge it these days. That is something which has changed with age. I am comfortable enough to say I have a chronic illness even to people I don’t know well. I am alright with people knowing the name of that illness. If people ask, I am happy to explain some of the implications of IBD. I will do these things because there is no shame in illness – or there shouldn’t be. Isn’t that the point of all the stoma selfies and hospital photos that are doing the rounds on FaceAche and the like?

For me, that’s a step too far. I still don’t shout about it, or wear my illness as a badge. And that’s a conscious decision. I choose to keep the truth of it to myself most of the time; only to let a tiny handful of people have the honest response to how are you? Not because I’m ashamed. Because I just don’t want the world and its wife knowing how hard certain things are for me. I don’t want sympathetic looks from people who don’t know me well enough. I don’t want people making assumptions about things they can’t possibly understand. I don’t want to be a walking case study for Crohn’s Disease.

As most of you know, I am a chronic insomniac these days, so my week began on Monday, having been awake since Saturday at 6am. Through Sunday night I had baked a batch of spelt crumpets. This was partly because I find baking therapeutic, partly to pass the time, and partly because bread products are one of my few go-to food items at the moment; one of the only things I can persuade my body not to reject. So there’s my first truth exposed. Crohn’s Disease plays havoc with a person’s enjoyment of food, unsurprisingly!

Having been up two nights straight, plus the days in between, and with the new legislations which state prescription drugs of a certain kind can put a person over the legal limit, the sensible option for this particular Monday, was the train. Such is often the way, hence my new-found familiarity with the Yorkshire commuter trains.

So, my week ran from there, as most weeks do – a blur of rushing backwards and forwards across the moors; some lessons; some planning; a couple of piles of pre-holiday marking; some one-to-one tutorials with students anxious to perfect their exam technique; a parents’ evening; a handful of meetings with colleagues; an external meeting about a very exciting project for 2016-18; LAMDA tuition; some additional LAMDA tuition as the exam date looms closer; some family time; some sleepless nights; some guilty TV pleasures in the form of Masterchef, Grand Designs Australia, The Apprentice  and The Bridge; a hospital appointment; a pharmacy run; a couple of phone conversations with consultants; a trip to the local independent cinema….just an ordinary week.

The only things that make my weeks different, are the number of tablets I take before I start my day; the number of tablets I take during my day; the number of days I go with totally disordered eating (not by choice); the number of times I secretly wince in pain as I walk down the corridor; the frequency with which I need to have a rest after I’ve gone downstairs to make tea in the morning because I am so fatigued; the fact that I have a microwave and two wheatbags in my office for pain relief; how deep into my energy stores I have to dig, just to do the bare minimum physical activity; how much of my body is affected by referred pain; the stash of drugs I can’t leave the house without; the deep-set rings around my eyes that take heavy duty makeup to disguise; the dips in my already frighteningly low blood pressure which can, without warning, cause the whole room to spin beneath me, even if I’m sitting down; the pain in my joints for no real reason; the way my mouth can swell up even if I haven’t eaten; how my eyes can turn bloodshot and itchy and puffy; the way rashes can just appear and disappear…little things which don’t register as anything other than facts to me.

Oh, and something else happened in this particular week – I finally got a date for the new treatment I’m due to start. That might not seem significant, so I’ll explain. For four years, I have been in a continuing and prolonged flare up. This hasn’t been an acute or rapid plummet in health as I’ve had so many times before. Those usually end with hospitalisation, sometimes resulting in surgery. Instead, this has been a steady decline, characterised by periods of more serious ill-health, and periods where my body has plateaued at a certain level of sub-normal functionality. For four years, I have not responded to the wonder drugs I have been treated with. For four years I have been gradually losing perspective of how unwell I am. I have learnt how to inject myself with various different substances, I have had infusions, I have had pills. And for four years, I have been waiting for someone to cast a fresh set of eyes on my situation. So that new treatment start date marks the ray of hope on my horizon. It also brings with it the fear of another disappointment, but I don’t allow myself to dwell too much on that.

So that’s my #7DAYSofIBD. If you feel you’re none the wiser about this debilitating condition, then I’d advise you to read a reference book on the subject. Because you could memorise every possible symptom attached to any given illness, learning the likelihood and severity of each symptom as you go, but you would still have no understanding of how such things affect a real human being in their day-to-day existence. I have written this blog because I want children growing up with IBD in this day and age, to feel they can talk to people about their struggles, so that maybe they will learn to be a little kinder to themselves. I want people to have more awareness and insight into what the words Crohn’s Disease really mean. I want people to feel inclined to support Crohn’s & Colitis UK so that research can continue and one day there can be a cure.

But I implore all those of you who I see on a regular basis – please don’t start looking at me differently. Don’t try and second guess whether or not I’m in pain when you say ‘hello’. Don’t assume I’m too frail to fulfil my responsibilities. And don’t, whatever you do, start to pity me.

Yes, my IBD has left me scarred – physically and mentally – but it has also played a part in making me the person I am today. If I am strong and positive, if I am determined and brave, if I am sensitive and caring, if I appreciate the good days, if I seek out the silver linings from every cloud…if I am all these things, it is because of the path I have walked and the hurdles I have jumped.  So I won’t say – love me, love my illness because most of the people who love me happen to hate my illness (ask Lovely Man, Mum, Dad and my sisters for starters!) but I suppose by talking about it openly, I am inviting more of you to accept the part of me I like least.

I am Emma Gordon. I happen to have Crohn’s Disease. It’s more permanent than a 7 day thing. But I am not my illness. Nor will I be defined by it. 7 days with me is not #7DAYSofIBD. It is just 7 days. Because I am Emma Gordon. Just Emma Gordon.