Body confidence with a chronic illness

Before we begin, a gratuitous picture of one of the only perks of having a chronic illness – I need a lot of protein to function and keep my weight steady, so here’s what I cooked up last night. Ribs. Apologies to any vegetarians.

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Delicious cookery aside, I’ve been having some major health issues lately, and any of you who have read more than one of my blog posts will, by now, know that I have Crohn’s Disease. It sits in my terminal ileum, nibbling away at the tissues there and making my life pretty uncomfortable.

I went to see my doctor yesterday (Wednesday) and we’ve decided to start down a new route of treatment to stop these constant flare-ups and get my health back on track. The medication I’m currently using isn’t working as effectively as it was, so I’m being sent down the path of a drug called Humira, which from what I understand is like a little missile that hunts down the bad stuff and melts it away. It’s all got to be approved by the NHS so I’ve got a bit of a wait until I actually start the treatment, so for now I’m being kept stable with a steroid course and my current medication.

My doctor said to me when I saw him ‘you look pretty good, you’re slim but you’re not gaunt anymore’ which for someone whose weight can get scarily low very fast is a good thing to hear. My trousers fit, and I don’t need a belt, so my weight is pretty much okay for now. I left the appointment feeling quite positive, and as I was walking home from the hospital, it got me to thinking about how I view my body these days with all my health problems, and these thoughts reinforced to me how much I want to work with people who have lost their confidence because of an illness or accident. I know what it’s like to lose yourself in a diagnosis and believe you’re crap and worthless, and my aim is to help people feel as good about themselves as I do about myself.

Because, actually, I really DO love the body I have now, even if the illness has ravaged the skin and made it hard for me to keep weight on, to the point where strangers make comments of ‘that girl needs a sandwich’ when they think I can’t hear them. I wasn’t big to begin with when I was diagnosed, because I’d just worked my behind off for four years trying to lose weight, as I had been unhealthy and overweight for years. And it was working – I was learning to love running, I’d dropped from 12 stone to just under 10 stone and from a dress size 16 to size 10/12 (these are UK sizes). I was the fittest I had ever been, the slimmest I had ever been and the most confident I had ever been. I was thinking of taking up trail running or maybe climbing – in short, I was feeling amazing.

And then for no reason I stopped eating, I started getting sick, and thinner and thinner and thinner, to the point where I was having to belt a size 6 skirt. I was diagnosed with Crohn’s pretty quickly, thanks to a combination of good doctors and a rapid deterioration on my part spurring everything on, and treatment started to get me well again and put some weight on me.

While I was at my sickest, my body was awful, and I pretty much looked like all those photos of too-thin models that are thrown around as shock journalism when it’s nearly fashion week and there’s no real news for the tabloids to report. The irony was, the super-skinny look was when I got the most compliments about my body, which for someone who was used to having curves was just… wrong… and it showed me how broken society’s perception of the perfect body actually is.

When I went back to work after being ill, but not quite back up to weight, all the females in the office were swarming around me asking how I had managed to lose so much weight and telling me I looked ‘amazing’ and ‘I hope you’re going to be rocking a bikini on your holiday this year with a body like that’. Those comments really made me stand back and think. I had never realised before how desperate the women I worked with were to be thin, and the initial compliments turned to spite and hatred when I didn’t put the weight back on to the extent I had before. I was the ‘skinny bitch in Ops’ and someone at work was actually reprimanded for telling someone else that I was the ‘skinny bitch in Ops’ – quite rightly so, because that’s not acceptable.

Their jealousy over the fact I was thinner than them made them forget that I’m only thin because I’m being gently flayed to death by my immune system on a daily basis. It’s not like I exercise beyond walking to get the newspaper in town or to the post office to pick up a delivery – I’ve not stepped foot in a gym since the beginning of 2014. I watch what I eat but for different reasons – hello symptom trigger foods – and have to eat more than most people to keep going through the day. I write this as I am eating a giant bun from the local bakery, something the work girls would refuse on the basis that it’s a) carbs, b) covered in sugar and c) the size of a small paperback book so no, it’s not actually a healthy thing but it’s loaded with calories and seeing as I need to keep this weight I’ve got stable, that’s a good thing.

I also think the work girls were jealous that my lunch every day while I was in recovery mode was basically a big pile of pasta, salad and some kind of protein. I’m forever grateful to my mostly male lunch group at work for being amazing and NOT making snide comments about my food, both while I was on my recovery diet and everything I ate after that – in fact, no comments at all apart from ‘what’s in that marinade, it smells like heaven’ and memorably once ‘wait, you actually LIKE kale?’

I was feeding myself so much while I was recovering – I was desperate to put that weight back on. I am thankful that I have a mostly male friend group, because they are less likely to judge, and the girls I am friends with aren’t the type to slam your appearance so it was nice not being judged when I was very sick and also again now while I’ve been in this flare up. I have a running joke with a friend of mine where he will pinch my arm and say ‘yep, you’re ready for the cooking pot’ or something else silly. He has ulcerative colitis so he very much understands everything I go through, and it’s great to have him to talk to and eat with, because he won’t judge if I’m having to be super-picky because of a flare up or whatever. Plus he and his partner are pretty good cooks, so it’s always good to go round there for a meal.

While I was recovering after the initial diagnosis, my body was doing weird stuff to me – because I was so thin, I had developed a wispy layer of white down hair all over my shoulders and back because my body was trying to keep me warm while I was in starvation mode. It fell out after a while, and it hasn’t come back. Incidentally, when I went into hospital for my scans before my diagnosis, I weighed 48kg. I have never converted that to stone, but I do know that the year before when I had been weighed at my annual contraception check, I was 62kg. So you see how much weight I had lost because my own body decided to attack me.

I steadily went back up to a normal weight, and I’ve stayed there pretty much for the past four years, with the odd fluctuation of a stone either way if I’m in a flare or on a steroid treatment. I’m stable at an average of 9.5 stone, and as long as I’m ‘9-something’ on the scales, my doctor is happy. I have lost a few curves – my boobs, while still the same size according to my bra measuring magician at Rigby and Peller, don’t look the same. I’m not visibly as curvy up top as I was, and I will admit I do cheat a little now with slightly padded bras, which is something I never thought I would have to do. My bum isn’t as curvy either, and my thighs have a gap (which I don’t like, because I feel like it’s a bad thing for people to see someone with an actual thigh gap in real life and not on Instagram), but that’s down to lack of muscle, and as soon as I’m through this flare-up I’m going to start dancing again to build up some muscle and flexibility. Once I get back to barre and ballet classes, it won’t take long. I believe the underlying fitness doesn’t ever go, so hopefully by Christmas I should be on my way back to form. I’d love to run again, but that is a long-term goal that I’m working towards slowly.

As someone whose work now is, literally, making people feel good about themselves, the way I view myself is incredibly important to me. It’s very hypocritical if the person who is meant to be making a client feel fabulous isn’t feeling fabulous herself. It took a while to find my inner confidence again after my illness, and to get used to what is now my new normal, but apart from days when I’m flaring to the heavens and can’t move, I feel pretty good about myself. I like what I see in the mirror, for the most part. I’ve been a bit of a negative Nancy lately, but I’ve been so, so ill and it’s hard to be positive when the simple fact you managed to get out of bed and brush your teeth is a massive achievement.

I also think the fact that I’m not very young has helped me keep a positive lid on how I’ve viewed myself with this illness. If I was younger, more insecure and being bombarded on social media with perfect bodies every day, I think it could have been quite damaging to me mentally. I know some younger Crohn’s sufferers I’ve met online have huge hang-ups about their bodies now they’re sick, and I want to mother every single one of them and say ‘it’s okay, you’re still fabulous, but you need to accept that this is your New Normal and you need to find a way to deal with it’. My skin is rubbish, all over my body, and I’ve finally accepted that – the acne scars on my face from the medication are nothing that a good full coverage foundation and some clever concealer can’t handle, and quite honestly if people want to judge the discolouration on my back and legs, go ahead, you clearly have nothing better to do than pick at how I look and I hope you’re perfect before you start throwing stones.

Maybe the fact I loved myself before helped me deal with the changes that Crohn’s brought to my body – I don’t know, but I do know that how I look is, in my mind, pretty okay. This is the body I have. It’s too thin, it’s scarred, it’s spotty, it’s discoloured and it’s covered in dry skin. But it’s mine, and I love it.

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