#HAWMC - Day 1

It’s the first day of this year’s WEGO Health Writing Challenge (#HAWMC)! I wasn’t too keen on taking part this year as I’m working on a new book alongside my full time ‘proper’ job and have been feeling physically lower than a worms bra strap. But I figured it might be a good way to keep the writing momentum going as well as getting some much needed inspiration from my fellow health writers taking part!

So anyways todays writing prompt is as follows: 

Let’s get to know one another! What drives you to write about your health? What do you want other activists to know about your condition and activism?

Well if you are reading this chances are you already know a little bit about me and my writing (HI MUM), but if not then allow me to inform you of what you have SORELY missed. I live with several chronic conditions, the most prevalent being Crohn’s Disease. I was diagnosed with arthritis age 25 then Crohn’s shortly after – since then I’ve developed chronic migraines, nerve damage,  Gilbert syndrome, anaemia, low blood pressure, anxiety etc etc to infinity.

I started blogging about my experiences of life with Crohn’s Disease in 2011 shortly after my first surgery. Since then I’ve been nominated for/been finalist in several blog awards, and have had my first book based loosely on my blog published in May of this year! (it's called Go Your Crohn Way and availability from all good retailers FYI) ;) 

But coming back to the prompt: what I’d ideally like others to take from my writing would be a feeling of comfort, camaraderie and a decent laugh every now and then. I’ve always written in the hope that I can help educate and inform people on how it feels (physically and mentally) to live with incurable illness. I want to remind patients and their families it’s possible to thrive despite a chronic condition and not just ‘survive’. My drive to keep writing comes from hearing and seeing others stories, and just how difficult they find adapting to illness. There is always, ALWAYS someone who needs a little kindness. Incurable illness never ends so I keep writing for myself and for others in the hope some of that kindness rubs off. Pass it on, it feels great! X

Grimace and Bear It

A little thing you may or may not know about me: I’ve got a very defensive personality. I snap easily when I feel I’m being threatened. The arms cross, the brow furrows and the attitude of a moody teenager positively reeks from me. I hate it. I try to stop it, because I know it’s counter-productive and halts any attempt at adult discussion, but it’s sometimes almost impossible to rein in. It doesn’t always happen. But more often than I’d like it does, and I beat myself up about it A LOT.

I’m also insecure about my body – I’m scarred and bruised from surgery and seemingly endless procedures, and medication means my weight fluctuates so regularly that I can go from balloon to pancake and back again in a matter of minutes. When I’m bloated I feel embarrassed and ugly. I feel ashamed of my appearance. (So you see how the defensive personality might cause a problem here; if someone so much as glances at my stomach I am on them faster than Nutella on toast).

I’m well aware this defensiveness and my occasional hatred of my own female form is nowhere near a good attitude to have, but at least it’s real, and honest. I’d love to be a shining example of woman-hood who could wholeheartedly embrace her curves and teach others to do the same: and I like to think I do on the second point certainly; I’m my friends’ biggest cheer-leaders when they doubt their own (unmistakable to me) beauty. Only I can’t embrace my ‘curves’ because (my cracking rack aside) mines aren’t natural. They are caused by a crippling illness. The difference between these two pictures for example is 10 minutes. The first was pre-meal, the second minutes after dinner.

Bloating is painful and very uncomfortable. It’s constricting and makes me incredibly self-conscious. Even around the man I love. I don’t like to see myself looking this way mainly because it never seems to be a true reflection of me; even though it quite literally IS a reflection of me. 

In much the same way my scar did when it was fresh and new, it makes me feel ‘diseased’. I know it’s the not fit for purpose parts of my insides that are causing my physical appearance to be altered and it reminds me of what I’m dealing with. I can’t hide under smocks all my life, I have to grimace and bear it.  

This week I’ve struggled with work as my joint pain has escalated. My arthritis is causing my hands and knees to swell and ache. The pain can be overwhelming and incredibly frustrating. I suffer from nerve damage too, (another fun side effect from chronic illness) and that too has been reminding me there is pain to be found everywhere if I look hard enough. Thanks carcass! Joint and nerve pain make me feel old and I’m not. Combined with Crohn’s bloating I feel like a beached whale that can’t so much open a jar at the minute. Although whales don’t have pose-able thumbs and no call for opening jars I suppose, so one nil to me there I guess.

I’d love to be more accepting of what my disease does to my body but I can’t. I won’t. My body is MINE. So why does it feel parts of it are being controlled by some outside force trying to halt the inevitable process of Jon Hamm falling in love with me?

Of course ALL women bloat. You do. You DO; don’t lie Janet no one believes you. You just put gorgeous filters on your Instagram pictures or stand coquettishly behind vases of flowers/your fatter friend so we don’t notice. That’s fine, whatever works for you; just remember when we don’t admit our bodies are flawed (whatever that means) we alienate our own kind. We tell our daughters and sisters and mothers that their bodies are something to be hidden. So WHAT if you stomach swells after a meal? Would you leave your husband if /WHEN his does the same? No, exactly. 

Letting my body dictate how I view myself is stopping me enjoying the short time I have to do everything I can with it to make myself and other people happy. Sometimes we all just need to power through the self-consciousness. There are several things I’d like to see written on my gravestone when the time comes and ‘DIED ALONE DUE TO BLOAT SELF-PITY, SURVIVED/EATEN BY HER 45814845 CATS’ is not one of them.*

*some potential alternatives:

‘DIED TRYING TO OPEN A JUMBO NUTELLA JAR’

‘DIED AFTER BEING ATTACKED MY A GANG OF KILLER WHALES EXACTING REVENGE FOR A BADLY RECEIVED 2016 BLOG POST’       

Everything Is Beautiful (In It's Crohn Way)

Since I began writing about my condition back in 2010, I've gone through countless physical and mental changes. My outlook on my own mind and body has altered tenfold - sometimes for the better, and sometimes, well the less said about the worse the better. 
Right now I feel good, and maybe even content. My health is improving, my treatment is working, and although I seem to be kicked in the teeth every few days with colds and bugs and the ilk, I'm not in constant and unmanageable pain - which allows me to live a relatively 'normal' life. I've got loads of exciting things to look forward to in the coming months which are giving me purpose I've lacked for a while, and goals to aim for. I'm setting myself hoops to jump through and applauding myself for the little (and large) things I do achieve instead of berating myself for the things I don't.

Perhaps the most telling thing I've discovered in the years following my diagnosis however, is that doing the work on my mind has changed my opinion of my outer-casing too. Becoming mentally happier has made it harder to internally punish myself for putting on/losing weight for example. I've almost stopped worrying how I look; no that doesn't mean I've 'let myself go', but I've tried to concentrate on what the changes inside and outside of my body mean for my health - not merely my vanity. 

Of course, just because I feel better about my body, doesn't mean everyone else will necessarily follow suit. 

Over the years I've been accused of portraying an 'idealised view' of life with chronic illness, I've been maligned for complaining about steroid weight gain because I'm 'skinny', criticised for mentioning I've lost weight because 'well it's easy my body does it for me'. Amongst many other inane and insensitive comments.

It's easy, for the most part, to let this slide over me of course, mainly because I'm so skinny and svelte, built much like a slalom in fact; but the anger tends to rear it's head when I think of others who are perhaps struggling with their appearance due to the toll chronic illness takes on the body. Some people don't find comments like the above so easy to laugh off or tolerate. Some take them to heart and go insular. They stop talking about their illness through fear of judgement or mocking. They feel shame and embarrassment about their own skin and what lies beneath. 

So how to deal with this?

For me, I feel it's important to try to educate rather than take umbrage at insults or ignorance. I can take such an enlightened view you see, as I'm so slim I'm basically weight-less. 
When outsiders make mention of my weight/appearance/startling beauty/comment on what I should or shouldn't do to 'cure' my incurable condition, I begin by mentioning that my weight fluctuates as my illness and medication cause it to do so, and that although I very much appreciate you taking such an interest in my body, I have doctors and a lover to do just that, of which you are neither. 
When I can eat well, I do, and I don't make any apologies for that. I am happy when I am healthy, not 'skinny'. (and as a quick reminder: skinny has never been default for beauty).

Over the years the parts of my body i've hated have been in the hundreds (at least). As a teen I hated my 'flat' chest; as an adult I hated my 'big' bust. I've always disliked my 'big' nose, my 'pointy' chin, my 'squint' teeth, my 'uneven' hips, my 'chicken' legs, my 'knobbly knees', my 'massive' forehead, my 'kinky' hair, etc etc TO INFINITY. 
Then, PC (post-Crohn's) i hated my 'dry' skin, my 'falling out in clumps' hair, my 'bloated' tummy and my 'unsightly' scar. Do you see how everything is pre-cursed with an insult? Why do we do that? Why don't we ever enjoy our bodies?

I gave up hating every freckle on my body when it struck me that I was alive.

If I looked like [enter your own definition of ugly here] or [enter your own definition of beauty here], it didn't matter one iota. It mattered that my heart was beating and my lungs were breathing. It still matters.

I'll continue to talk openly and honestly about my struggle to accept something often impossible to accept because it helps me feel less alone, and because I want YOU to feel less alone. I don't ever want to feel singled out or vulnerable due to something that chose me to inhabit. My body just happens to be an unwitting vessel for an incurable illness: I have to accept that but I don't have to lie down to it. I have to maintain how I want to seen by myself and by others. 

So there you go; having a chronic illness makes me feel pretty ugly a lot of the time, but courage and beauty is more than skin deep. Don't listen to anyone implying you are somehow less of a person because of your disease; you are so, SO much more. 

  

S

Crohn Star

I feel great today. I feel ‘well’. And I’m not even being sarcastic.

I’ve had a rough few days; loaded with the cold and pestered by migraines and last night a spontaneous chicken korma got the better of me, leaving my stomach swollen to the size of a heavily pregnant, but surprisingly alluring, elephant.

Physically I’m still utterly exhausted. Constantly blowing my nose, coughing up my lungs, a kidney and a lasagne I ate in 1992, but I feel better.

In the past year I’ve been quite badly affected by anxiety and depression. I didn’t realise any of this until it was pointed out to me by people who are medically trained/have half a brain cell. It’s never been something I’d considered in the early days of my illness; that my head would misfire in the same way as my body does. But it happens. It happened to me. It’s happening to me.

For a while now, and much to my own chagrin, I’ve hated my body. I’ve tried to pretend it doesn’t matter to me that I’m scarred and bloated, that my skin is porcelain and speckled in syringe marks, but it does matter. Because although I don’t care if YOU don’t like it – I care that I don’t. It worries me when I begin to disgust myself, because it means my disease is winning.

I’m generally pretty positive, and try to maintain a positive outlook on my illness (and my appearance), but being diagnosed with depression made me sink lower into self-hatred. I felt worthless and pointless. I didn’t care about myself. I’d past the point of being pro-active and slipped into a version of browbeaten acceptance. Everything I’d written, about how to live despite your illness, seemed embarrassingly hypocritical – I wasn’t doing that so what gave me the right to profess the same to you?

So today I’m enjoying the fact that those feelings are at bay. I feel happy and confident and attractive. I feel loved and valued. And I value myself. I’m a few months into my anti-depression medication and a few months into my Infliximab treatment. I don’t know if I still feel ‘depressed’ – I suppose I do from time to time, as many of us do. But my treatment is working and my mood is lifting.

I don’t feel hopeless I feel hopeful.

I feel positive about the future and happy to have such incredible support, tangible and otherwise.  I hope you all feel great today too. If you don’t; you will. Remember, like eye-patch aficionado Gabrielle once said, ‘Dreams can come true’, and I know that’s accurate because Jon Hamm is now single.  

Hips Don't Lie

The other day, when trying on a series of potential outfits for a night out, I looked in the mirror and did a little twirl. I felt good. I looked good. At least for approximately a tenth of a second. My confidence in my own appearance was then abruptly bombarded with a rapid-fire series of hard 'truths'. Let me quickly run through just a few of those thoughts to give you an idea of what it's like for a woman looking at herself in a pretty dress; 

- Jesus look at your hips one is higher than the other
- Your whole body is squint how is that possible?
- When did your hips get that weird shape? How do we change that?
- Your stomach is sticking out again. GREAT.
- Is that bloat or actual fat? PIG.
- This dress is hanging all wrong. 
- Muffin top ALERT.
- Boobs are squint. 
- Four boobs and back fat.
- Your legs are too skinny you look like you'll topple over. 
- Too much cleavage you'll look loose
- Look at your daft face. 
- ARE YOU INSANE TO EVEN CONSIDER GOING OUT IN PUBLIC IN THIS?
- GET THAT DRESS OFF IMMEDIATELY. BURN IT.

Fun eh?! There's just a snippet of just some of the nastiness that flew around my head in almost the same moment I considered myself vaguely attractive. I instantly felt despondent and resigned myself to wearing a bin bag with a bit of rope tied around the middle instead of ever considering a dress again. But not pulled too tight obviously; I'd only accentuate those lumpy bits. Actually sod it I'll just tie the rope round my neck and be done with it. I'm already in a bin bag so my gargantuan body would be relatively easy to dispose of. 

1 Year Post-Op...

Anyway, a few days passed and I was blessed to receive some random abuse online for "portraying an idealised view" of living with chronic illness. I was advised by this complete stranger that I'm "skinny" and needn't worry about my weight because my "disease does it" for me. 

I instantly felt the confidence I'd lost in front of the mirror return with a vengeance.

I firstly felt angry though, because those comments reminded me that there are incredibly ignorant and rude people in the world who want to bring nothing but misery to strangers. STRANGERS. How utterly inane. It reverted me back to childhood and learning that when a boy is mean to you and pulls your ponytail it's because he really just wants to be your friend/girlfriend and doesn't know how to communicate those feelings yet. Online Neanderthals who bully and insult women by tapping nonsensical rubbish are nothing but idiotic little boys who have no idea who to approach a human being with anything other than bile and ingrained and incomprehensible hatred. 

I don't understand it and can't (and won't) begin to try.

But I do think it's important not to ignore it. I responded to this particular prematurely ejaculated spurt of drivel, by posting a picture of my own "skinny" body and all it's imagined flaws. Not because I wanted to justify myself, but because I couldn't bear the thought of young, vulnerable women being subjected to cruelty simply because they have the courage to enjoy their lives, and love their bodies. 

Have you any idea how heartbreaking it is when you are told you have an incurable illness? Imagine then, that same horror but as a child, or a blossoming young woman. It's difficult enough growing up and being told everything about your body is wrong, without that torture being compounded by an illness that will change your body beyond perhaps all recognition. 


Nobody is perfect; we all say hurtful things about one another. But no BODY is perfect either: why should we strive for 'perfection' when everyone has an individual idea of what that is? How stupid! 
I don't want a perfect body because I haven't got the first clue what that might entail. I just want to be happy. If that means I eat a cake or 5 then who the hell cares? I can't often eat and enjoy food as I'm generally in excruciating pain, vomiting or passing everything but my colon into the bathroom porcelain, so when I have the opportunity to get pleasure from food, I grab it like online trolls grab their penises when Pamela Anderson runs across the beach in Baywatch. (Or whatever kind of woman they consider to be 'perfect'). I don't know what that means, and neither do they because I'd wager the only breast they've encountered in life is their mothers and or a fried chicken one. 

But I digress. My point remains; women, and humans in general, are individuals and we all find beauty in different things. Isn't that amazing? Imagine everyone liking the same thing? How BORING. I'm not saying I'm now 100% comfortable with my own body, but my post-mirror reflection has taught me that it doesn't matter. I don't have to destroy my own confidence; there are always people out there wiling to help out with that one! 
Loving our own bodies despite what strangers/ doctors/ anyone else with a pulse may say is a vital starting place for adapting to any form of illness, and really any form of life. 

We all need to learn to be our own cheerleaders. 
If that's too difficult a place to start then give me a call. I've been told I have great Pom Poms.  

4 years Post-Op, 10 mins into toilet-centered mid-life crisis.

Started From The Bottom

As a young woman I always had issues with confidence. Let’s just say I sorely lacked it. I still do, although certainly not to the same extent. This lack of self-confidence wasn’t all in my appearance; (I was a late developer), but also in my own abilities. To do anything really, and certainly not to do it well. Can you imagine?! I also struggled with friendships and relationships as I got older, and probably naively allowed myself to be taken advantage of on more than one occasion. I suppose I assumed (internally) that anyone who wanted to associate with me must have had something a little bit wrong upstairs; in the common sense department. That old 'if you don't love yourself, how can you love anyone else?' chestnut reared its head on too many occasions.

Now of course I love many people. Too many to mention without upsetting someone by forgetting to include them I’d wager. My family, my friends, my love.

I don't love myself as much as I'd like, but maybe enough, now. I tread that fine line between vanity and self-assured. I no longer need or want validation from people around me, or strangers, as I once did. I merely need to be able to look in the mirror and like what I see. Be that a glass or metaphorical mirror.

But what of that elusive self-confidence and living with chronic illness?

I'd say with certainty that my own diagnosis led to several steps back in my search for confidence. I was suddenly thrust from being a young outgoing woman in the prime of her life, to a bed-bound-misery-guts. (Quite literally on the guts front).

I was ashamed of whom I saw when I looked in the mirror: generally Skeletor in heels. I felt 'unclean' somehow. Tarnished. I'd been pushed through the medical ringer and come out looking and feeling utterly washed out. I didn’t even smell like fabric conditioner.

Chronic illness leaves you exhausted. It's a priority in the morning for most of us to GET OUT OF BED, shower and dress in an allocated time. Things which were once done on auto-pilot suddenly become massive feats of superhuman strength and endurance. Most days I'm half way into my bus journey before checking if I've remembered to put a bra on or apply mascara. Our day ahead is almost always entirely dictated by how we feel when we wake up. Therefore where is the time (or enthusiasm) to be found to make an effort to look more like Naomi Campbell and less like Stig of The Dump? It's intangible for me most of the time. 

Lately I've been trying to focus on getting a little fitter. Now that my Infliximab is well under-way I'm starting a little more daily exercise. It's difficult and tiring but I have noticed I'm gaining more energy and feel a lot more positive about myself afterwards. Maybe it’s those happy endorphins or maybe just being proactive helps. I'm not going to become one of those women who only talks about Smoothies and Yoga positions don't worry, I'm just trying to get a little more into the shape and into the state of my mind I feel comfortable in. So far it's working - although I do get a little disheartened on a daily basis when that IBD bloat rears its bulbous head. How's a girl supposed to wear a body-con dress with a baby bump made entirely of mashed potato and swollen guts?

Body confidence (and otherwise) is a constantly evolving process. It can be stunted by illness, and frequently is. It can be knocked down with negativity (from inside or outside) and it can be chipped away at by your own doubts. But essentially what's important is who you want to be. Or even just initially convey. You can take everything a step at a time. Baby steps. Unless I'm behind you in a busy shopping centre, then GET OUT OF MY WAY SLOWCOACH. Don't push yourself to be someone you're not too soon. Let yourself grieve for the former ‘you’ if you need to. I know I did. I often feel like 'Kathleen (Pre-Crohn's)' is a stranger I vaguely remember from my past who used to be a lot of fun then got sick. I don't see her anymore though because she's not important. I look to this new version of myself and how to make her the best I can be, Crohn's or no Crohn's. 
She’s doing pretty well. And so are you xox

Hips Don't Cry

The other day, when trying on a series of potential outfits for a night out, I looked in the mirror and did a little twirl. I felt good. I looked good. At least for approximately a tenth of a second. My confidence in my own appearance was then abruptly bombarded with a rapid-fire series of hard 'truths'. Let me quickly run through just a few of those thoughts to give you an idea of what it's like for a woman looking at herself in a pretty dress; 

- Jesus look at your hips one is higher than the other

- Your whole body is squint how is that possible?

- When did your hips get that weird shape? How do we change that?

- Your stomach is sticking out again. GREAT.

- Is that bloat or actual fat? PIG.

- This dress is hanging all wrong. 

- Muffin top ALERT.

- Boobs are squint. 

- Four boobs and back fat.

- Your legs are too skinny you look like you'll topple over. 

- Too much cleavage you'll look loose

- Look at your daft face. 

- ARE YOU INSANE TO EVEN CONSIDER GOING OUT IN PUBLIC IN THIS?

- GET THAT DRESS OFF IMMEDIATELY. BURN IT.

Fun eh?! There's just a snippet of just some of the nastiness that flew around my head in almost the same moment I considered myself vaguely attractive. I instantly felt despondent and resigned myself to wearing a bin bag with a bit of rope tied around the middle instead of ever considering a dress again. But not pulled too tight obviously; I'd only accentuate those lumpy bits. Actually sod it I'll just tie the rope round my neck and be done with it. I'm already in a bin bag so my gargantuan body would be relatively easy to dispose of. 

Anyway, a few days passed and I was blessed to receive some random abuse online for "portraying an idealised view" of living with chronic illness. I was advised by this complete stranger that I'm "skinny" and needn't worry about my weight because my "disease does it" for me. 

I instantly felt the confidence I'd lost in front of the mirror return with a vengeance.

I firstly felt angry though, because those comments reminded me that there are incredibly ignorant and rude people in the world who want to bring nothing but misery to strangers. STRANGERS. How utterly inane. It reverted me back to childhood and learning that when a boy is mean to you and pulls your ponytail it's because he really just wants to be your friend/girlfriend and doesn't know how to communicate those feelings yet. Online Neanderthals who bully and insult women by tapping nonsensical rubbish are nothing but idiotic little boys who have no idea who to approach a human being with anything other than bile and ingrained and incomprehensible hatred. 

I don't understand it and can't (and won't) begin to try.

But I do think it's important not to ignore it. I responded to this particular prematurely ejaculated spurt of drivel, by posting a picture of my own "skinny" body and all it's imagined flaws. Not because I wanted to justify myself, but because I couldn't bear the thought of young, vulnerable women being subjected to cruelty simply because they have the courage to enjoy their lives, and love their bodies. 

Have you any idea how heartbreaking it is when you are told you have an incurable illness? Imagine then, that same horror but as a child, or a blossoming young woman. It's difficult enough growing up and being told everything about your body is wrong, without that torture being compounded by an illness that will change your body beyond perhaps all recognition. 

Nobody is perfect; we all say hurtful things about one another. But no BODY is perfect either: why should we strive for 'perfection' when everyone has an individual idea of what that is? How stupid! 

I don't want a perfect body because I haven't got the first clue what that might entail. I just want to be happy. If that means I eat a cake or 5 then who the hell cares? I can't often eat and enjoy food as I'm generally in excruciating pain, vomiting or passing everything but my colon into the bathroom porcelain, so when I have the opportunity to get pleasure from food, I grab it like online trolls grab their penises when Pamela Anderson runs across the beach in Baywatch. (Or whatever kind of woman they consider to be 'perfect'). I don't know what that means, and neither do they because I'd wager the only breast they've encountered in life is their mothers and or a fried chicken one. 

But I digress. My point remains; women, and humans in general, are individuals and we all find beauty in different things. Isn't that amazing? Imagine everyone liking the same thing? How BORING. I'm not saying I'm now 100% comfortable with my own body, but my post-mirror reflection has taught me that it doesn't matter. I don't have to destroy my own confidence; there are always people out there wiling to help out with that one! 

Loving our own bodies despite what strangers/ doctors/ anyone else with a pulse may say is a vital starting place for adapting to any form of illness, and really any form of life. 

We all need to learn to be our own cheerleaders. 

If that's too difficult a place to start then give me a call. I've been told I have great Pom Poms. 

One Sick Pony

I’m a 31 year old woman. 

I was 26 years old when I was finally diagnosed with a chronic illness called Crohn’s Disease. 

For those not familiar with the condition it’s an ‘invisible’ illness which causes inflammation of the intestinal tract and disease itself can be located anywhere from the mouth to the anus. On the scale of sexy diseases it’s probably pretty far down the list. Who made a scale of sexy diseases anyway? What’s wrong with you? PERVERT.

Due to the invisibility of the condition it’s often difficult to express how you feel without fear of judgement or disbelief. If you look fine on the outside it’s natural people would be surprised to find you feel like your intestines are about to combust on the inside. But it’s not all invisible. Many of the treatments, medications and general upkeep in living with the illness can leave side effects and symptoms that are far from invisible.   

Before I knew I had Crohn’s, I had arthritis. In my knees, at 25. Nothing majorly unusual about this I hear you cry, but I was of the assumption at that time that OLD people had arthritis. Pensioners, who are generally slow and live at a snail’s pace, anyway, have the defunct bones and muscles because that’s the way of the world when you start to age. I was in my mid-twenties and suddenly found myself in excruciating pain when I so much as bent my legs. I was despondent and miserable, and depressingly in the position of considering treatments and taking drugs and having ABSOLUTELY MASSIVE needles stuck into my knees. I couldn’t enjoy dancing or swimming like I once had, and couldn’t even cross my legs without discomfort. It was an odd, new and unexpected situation.

Mere months later I was in agonising pain higher up – in my stomach. I was suffering from another issue, the aforementioned Crohn’s. If I’d found the arthritis a frustrating challenge up to now, I had no clue what was ahead of me.

I was a young woman, being wheeled in and out of hospital and terrified. I managed, around my hospital visits, sick leave and treatments, to have as normal a life as possible in an abnormal situation. But the little things you will inevitably encounter when living with chronic illness are often those which leave a mark that’s far from invisible. Blood tests left my arms bruised and sore, cannulas left tiny life-long scars over my hands and arms and intense courses of drugs left me either bloated like an inflated hamster or painfully pale and thin. 

There was, there is, no happy medium.

When I had my surgery, I fretted my stomach would look repulsive when I came out the other side. I worried I’d have a stoma, and that I wouldn’t be able to adapt. That I’d have to dress in unflattering smocks for the rest of my life, and that the man I love wouldn’t dare consider engaging in intercourse with me for at least the next few millennia. Looking back now, I realise that the worry around my operation really was just the cherry on an already highly calorific anxiety cake. I became aware that my so called invisible illness was having a much bigger impact on how I viewed my body than I had realised.

Young women as a rule have difficulty with the way they view themselves, there’s always at least one part of the body we hate/wish we could change/find abhorrent. I don’t think that necessarily fades with time either, maybe we just learn to live with those bits a little more, or find solace in the fact that someone we care about finds something beautiful in them. (Not that we all require reassurance from another person to appreciate ourselves of course). I’ve got a big nose and a big chin for example; I hated them with a passion as I grew up, then I realised my Dad has the same features and I absolutely adore my Dad so it’s nice I have something of his. When people say I look like my Dad I take it as a compliment, as a teenage girl that wasn’t so easy, but now I accept he was a handsome devil in his heyday and is a wonderful person, so what could be wrong in his daughter carrying some of that on?

Trying to see the positive in what you perceive to be imperfections isn’t as easy as it should be, and can be made infinitely more difficult when your body, internally and externally, can change so much with a chronic illness. Like many illnesses of this type they are incurable, so viewing changes in your body positively is an ongoing and relentless struggle.

I try to focus now on what I can change; if I look pale I make up my face a little, if my skin and scalp are dry and sore I lather myself in sweet-smelling creams until I feel luxuriant. 

If all else fails I stand in front of the man I love in the nude and see if he runs out the door screaming and crying in horror, or grins from ear to ear.

Once I finally manage to beg him to come home and dry his tears, I feel I can achieve anything. 

Booty School Drop-out

One of the main stumbling blocks in helping those around us understand the complexities of our illness is lack of education. Many patients themselves are ignorant of their own disease. With this as a starting block how can we be expected to educate anyone else?

I know people who profess to have Crohn’s Disease yet can’t even spell it correctly. C.R.O.H.N.S. I can certainly understand this from those without it; my boss for example spells it in such a myriad of different combinations that it feels like I’m solving a conundrum every time I see my paperwork. Obviously I write about Crohn’s a LOT but I don’t think it’s too presumptuous to assume you should know the name of what you are suffering from for starters.  Bad spelling aside, I find myself continually batting away inaccuracies and inane theories about IBD on a daily basis. My local doctor’s surgery is pretty lacking in knowledge when it comes to Crohn’s for example. In the past few years I think I can safely say I’ve taught them more than they’ve taught me about IBD. This in itself is a bit of an embarrassing disappointment.

Theories on the effects of IBD seem to vary from ‘OHMYGODYOURGOINGTODIE’ to ‘it’s just like IBS’ – neither of these being in any way accurate. In fact they are both deeply unhelpful for both patients and those around you. My office at work for example is a hive of hypochondria. Most days someone will have a stomach ache/period pain/IBS/eaten a dodgy curry and ‘know how I feel’. This infuriates me so much that depending on my mood on any given day I usually either smile politely through gritted teeth or straight up blank them. These comments only serve to remind me that people seem utterly reluctant to see past the outer shell and take on board that I have a serious illness. They gleefully fire their own suggestions at me if I look a little peaky – ‘eat more’/eat less/have a lie down/work less/take a holiday/go to the toilet’ ETC. I am aware they are perhaps just trying to be helpful, but it’s really only supportive If any of these suggestions have ever proven to work.

The idea of just going to the bathroom to sort myself out is an exasperating one. As if the toilet is some sort of magical pot of gold on which I’ll expel the tears of a unicorn and a leprechaun will hand me a piece of silk loo roll and all my woes will evaporate. (Although that would obviously be AWESOME).
Crohn’s patients do not go to the toilet 4505781 times a day. We don’t have diarrhoea 5754157854 a day and we don’t feel better if we just ‘eat the right things’. People with ‘upset stomachs’ do not know what it’s like to have Crohn’s Disease because WE HAVE AN INCURABLE ILLNESS not a bout of diarrhoea that will pass in 24hrs.

As we are a few days away from a new year I’d like to make my resolution to educate rather than continue to allow myself to become infuriated with inane comments. If someone makes a poorly judged joke at the expense of my condition I’ll calmly kill the mood stone dead and explain that it’s actually utter bullshit. Facts before funnies. I understand that this will undoubtedly lead to the party invites drying up but that OK. I spend most of the time at any party in the toilet anyway…

My Flare Lady

I feel one of the main reasons Crohn's Disease has gone unspoken for such a long time, is because it's not an 'attractive' disease. Let's face facts, no one particularly wants to talk about bowels and bums, and what comes out of them. It's not sexy and it's certainly not alluring. 

It's also a vicious circle when you begin to conceal your condition from the rest of the world, and allow yourself to feel nothing but shame and embarrassment. 
Don't get me wrong, when I first found out I had the disease I was mildly mortified. My family is not one for openly discussing the ins and outs of the human body in great detail so I found it incredibly hard not turning 50 shades of red in the doctors surgery. I suddenly found myself having to discuss my stool, my anus, my diet and perhaps worst of all (depending on your opinion) - have random men stick their fingers in my orifices without buying me a drink first.

As a woman with all the womanly bits and bobs, it's important to feel attractive. Not in a vain 'look at me' way; but for myself. As a young woman I was a very late-developer and was mildly obsessed with growing up: when I get boobs everything will be fine. Boys will like me and the 'cool' girls will respect me. 

Depressingly, both of those wishes came true. When I realised I was suddenly appealing simply because two pieces of flesh had formed on my chest it was a jolt from the blue - why was I interested in impressing people who up to now hadn't given me a second glance? Pathetic really, and stood me in good stead for the rest of my life. 

Now I was suddenly a fully fledged woman with the baby-feeding badges to prove it l, I was determined to be more than just the wrapping. I stuck in at school and college and worked 3 jobs to get me through. I shunned men who were only after 'one thing' and I pummelled sexism into significance in the kitchens and bars I worked in to earn my keep. 

When I consider what it means to be a woman I see strength, independence and beauty. You don't have to look like you've been dragged through a hedge backwards to consider yourself a feminist. Where in the rule book does it tell you you are somehow less of a woman if you like wearing make up and grooming your lady-bits? 
I love women. Especially the women I am so blessed to have around me. My Mother and my Grandmother are two of my all time favourite women - inspiring and independent - my Gran lived a long and happy life after her husband passed and always looked immaculate. She was hilarious and compassionate and passed all of that and more onto my Mum. 

My friends are a beautiful pick and mix of all my favourite qualities in humans - women who make me incredibly happy everyday, and very proud to have a vagina. 

But what does it mean to be a woman living with a chronic illness?
Well it means you may have to work that little bit harder to look at your best; mainly because the last thing you often feel like doing is painting your face when you feel like death is tapping his scythe at your door.
It means you have to embrace your illness, not hide away. Learn everything you can about your condition and hone your knowledge to become as healthy as possible. 

It means you have to be open, and honest, and never, ever, ashamed of your own body. 

Really that goes for men as well as women. Because after all, we may have different baby-making and sexy-bits, but we all do a number 2 in the same way. Just some of us perhaps more than others.