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The big question on my mind right now, is what does healthy look like? It is something I have been asking myself over and over again in recent weeks. It baffles me how many people keep telling me I look well, when I am, in fact, nearing the end of year five of being unresponsive to treatment. I accept that others don’t see what I see when I look in the mirror – the dark purple rings around my eyes that I affectionately term my Crohn’s rings, the pasty skin, the slightly sunken cheeks, the bruises that appear for no reason, the sore bloodshot eyes and the little patch of eczema I get below the right one when I reach a certain low – and I know I do a great job of hiding everything beneath my smile. That said, I still can’t believe that anyone could actually think I look well. So I started wondering.

From a very young age, we are exposed to the media perception of the ideal body. Women should look like waifs, with bones jutting everywhere, and men should have muscle definition and six packs. Of course, most of us reach a certain age and realise that skinny isn’t such a great look, and that a six pack is a fairly elusive thing. However, for a lot of people, those impressions are ingrained and imprinted on the subconscious. Whenever we look in the mirror and see that our reflections don’t match up to those ideals, we make mental notes to ditch the chocolates for a week or go swimming a couple more times.

I am, of course, speaking in huge generalisations here and here are plenty of adults with rational relationships with the mirror. However, there are also a great deal of well-adjusted people, who don’t like what they see reflected back at them. According to the NHS, at least 1 in every 100 people suffers from Body Dysmorphic Disorder, and is preoccupied by the flaws that only they can see. That figure does nothing to account for those of us with a more balanced, but still unhealthy, perception of how we look. While I certainly wouldn’t call it a disorder, I know and acknowledge that I have always had a dysmorphic view of my size. With Crohn’s Disease, size and weight are things that I have got used to fluctuating hugely. When my weight is very low, I subconsciously normalise it in my mind; I get so used to seeing a tiny me looking back from the glass, that when I put on weight, I think I am actually getting fat.

Fortunately I maintain the rational capacity to separate reality from what goes on in my head, knowing that my weight and the way my clothes sit are both proof that I am anything but fat. However, in those moments in front of the mirror, rational thought escapes me. They say a picture paints a thousand words, and if I were a little bolder like Sam Cleasby (author of So Bad Ass, the IBD blog that first made me think about being more open about my own condition) I would insert a picture of me in a bikini here. Contrary to many people’s belief that nothing scares me, the thought of that kind of exposure is terrifying, so there will be no scantily clad holiday snap any time soon. I will just have to stick with words while I explain that since March this year, my body weight has been dropping. It plummeted rapidly at first, and then stabilised and stuck at round about a 25% reduction on what the consultant calls my ideal weight. To lose a quarter of my body’s overall weight between late March and early June is quite alarming.

It is an odd thing to say, I know, but taking clothes out of the wardrobe to put on another outfit that hangs and bags, quickly becomes demoralising. Knowing that I didn’t plan to stay this weight, and that my goal was to regain the kilos I had shed as rapidly as I could, I resisted the urge to buy new clothes. I didn’t want to play to the little dysmorphic devil in my head, and give myself any motivation or permission to stay this way. I had bought new bras, and that was all I allowed myself to do. Any woman who has lost weight will tell you, the first thing to go, are the curves up top. I went to Israel in the summer, with bikinis that looked like I was a little girl using mummy’s wardrobe as my dressing up box. It was then that I realised just how much I had shrunk. I felt so self-conscious; like people were looking at me and judging. I actually found myself wanting to go over to people and say, This isn’t what it looks like…I haven’t made myself this way. I don’t think it looks good either, but of course, I didn’t. What I did, was surrender and buy some new clothes. While back in Israel in September with mum, on the most ill-fated, yet still lovely, holiday ever (that’s another story entirely) I dragged her to the Dizengoff Centre where I knew my favourite shop from my LA days was located. In American Eagle Outfitters, I bought two new pairs of size 0 jeans. It felt great to need to unbutton them to put them on.

When I returned home and showed LovelyMan my new purchases, he was aghast that I had only bought two pairs. Well, they do online shopping too. And they usually offer free international delivery. And I did just get an email with a discount code…indulging in myself is not something I often do, so it took about two weeks for me to get as far as the check-out. I would load the basket and then become convinced that I didn’t really need all that stuff, and leave it for a day or two before browsing again. By the time I came to buy, I had lost a bit more weight, and the size 0s were already a little loose. So I tried a double 0, actually hoping they would arrive and be too tight.

There’s still space between my tummy and the waistband.

As I said, I am no stranger to these dramatic weight changes. With a lifetime of Crohn’s Disease under my belt, I have looked skeletal more than once. In my sixth form days, leading into first year at university, I was incredibly ill. I will never forget coming back to Leeds in the November of my first term in Manchester, and meeting all my old school friends at the Town Hall for our final LGHS speech day. Just to paint one of those thousand word pictures for you: in those days, my brother-in-law had taken to calling me a famine victim. I am aware that the nickname lacks sensitivity, but anyone who knows my brother-in-law will understand; he has a unique sense of humour. I am sharing this with you purely to highlight how shocking an image I presented when standing in front of someone, even someone who knew me so well. Coming face to face with a girl I had been at school with for fourteen years, and had once been best friends with, she reached out and pulled me in for a hug. Then she stepped backwards, looked me up and down and said, ‘My G-d, you look amazing!’

She wasn’t alone in her admiration. Not long after that, whilst enjoying some pre-party drinks and getting ready for a night out with my university friends, we started posing for photos. I was dressed in my standard going out gear from that time, which tended to be tiny hot pants and a tight top teamed with huge platform knee high boots. I dressed that way partly because I liked it, and partly because I was too small to find jeans or trousers that would actually be fitted enough to look smart. I think the comment came after a Charlie’s Angels pose. This is how it went: ‘Ach, Emma, I wish I could dress like that. Honestly, I would kill for that stomach.’ To which I replied, without even thinking, ‘All you need is a chronic bowel disease, and you could have one too.’ I didn’t intend to shame the girl; her comment was tactless, but not meant to be cruel. She knew what the deal was for me, though, because I was going to be taking time off for my first surgery, so I had informed my friends. Thankfully, she diffused any potential tension before it had time to build, with a throwaway, ‘that needed to be said,’ and a refill for all our glasses. It’s only really now I’m dwelling on the question of what does healthy look like, that it comes back to me, plain as day, and strikes me as somewhat sad.

So, what is it that people see when they tell me now that I look great? I suppose it would be impossible to ignore the role I play in prompting people’s reactions towards me. I have learnt to hide the protruding bones and the concave bits beneath my ribs (winter helps) by layering clothes, so I cover my weight loss well. Of course, I buzz and bounce and smile, and I keep moving at a million miles an hour when anyone outside my very nearest and dearest is watching. My answer to the question, ‘how are you?’ tends to be a standard, ‘fine thanks,’ which satisfies most. I am well aware that these factors, driven by my instinctive desire and determination to disguise any signs of illness, contribute to the overall impression that I couldn’t possibly be ill.

I am not skinny like I was at eighteen, but my weight is frighteningly low for any adult (even one of my height) to be. It is possible that some genuinely think this is a good look. Some people might simply be filling a silence because they feel uncomfortable around illness. Perhaps some can actually see I am not well, but want to make me feel better. To the latter, I say thank you for your kindness; it is a lovely thing to want to pick someone up when you sense they are low. It is just a little bit dangerous too, though. It feeds into that dysmorphic devil, and makes me think for a moment, that the weight loss is really not such a big deal. If so-and-so said I looked great, I can’t be so frail.

With this blog, I suppose I am urging you to look more closely at the people in your life; don’t judge things based on first impressions, because there is usually more of a story when you scratch the surface. Finally, let’s try and challenge those pre-conceived notions of physical ideals. I fear for the younger generations and what they see and strive to become. Beauty is something that comes from within, not a dress size. More importantly, the cost of being skinny is rarely a worthwhile price to pay. Trust me, I know.


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