I don’t usually do re-posts. And World IBD Day was three weeks ago…but an old friend of mine (and Brilliant Blogging Inspiration) does a special sharing page, and she recently posted about feeling comfortable in our bikinis and our skin. It all seemed to tie in to acceptance of physical shortcomings or limitations. While I accept that I have Crohn’s Disease on a superficial level – I can’t very well do much other than accept it – it is one aspect of myself thatbI have never really accepted. Hence my need to be always alright! And recently I have been painfully aware of how much I wish I could be as kind to me as I am to others. If only I could forgive my own weaknesses as readily as do those of the people around me. That’s a whole episode of blogs in itself right there. So I will stick a pin it it, and say: for now, Vicki, this one is inspired for a repost by you! A little something I wrote last month; a special blog, to mark a special day.
You see, May 19th was World IBD Day – a day designed to raise awareness worldwide for the millions of people who live with a chronic illness that remains almost as taboo as mental health issues. Who wants to discuss bowel habits? Who wants to label themselves with a condition carrying the word disease? Who dares to ask questions about such private affairs?
For those who don’t know, IBD stands for Inflammatory Bowel Disease, and is the umbrella term for Crohn’s and Colitis. If you want medical facts about those conditions, go and have fun on google; that isn’t the purpose of this blog. This is about something more personal. I already said it was a special blog. And it is. But it is not an easy one for me to write.
Some people reading this know that I have Crohn’s Disease. To others, it will come as a surprise. And that is because I have spent a lifetime doing my best to ensure that I am not defined by my Crohn’s. I have learned many lessons from my wonderful mum. The biggest has been how to survive. I was born a fighter; and sometimes I fight a little too vehemently. I am so determined not to surrender to my condition – not to become a victim to it – that I push myself harder than the average 100% healthy person would. I work silly hours, bouncing through every project with a smile. When people ask, I am always ‘ok’ – regardless of how I actually feel. Not because I am a martyr, but because that is how I survive.
So why am I blogging about the one thing I have spent three decades burying? Simple. When I was about ten, I suffered my first major flare-up. I suddenly understood the disease I was living with; began to realise there were bigger implications than food allergies, trips to the hospital and eczema. And with that realisation, came responsibility. I made a promise there and then, that one day I would use my experiences to help make more people aware of IBD.
In my head, I was thinking along the lines of using my status as a well-known Actor to spread the word, but let’s not split hairs. I will never wear my condition as a badge, nor will I use it as an excuse, and I am certainly not about to bare all and expose my battle scar for the internet, but if I can’t speak out about living with IBD for its World Awareness Day, then there will never be a time to honour that promise I made all those years ago.
You may also wonder why I sent you off to google for facts instead of telling you from my point of view. That’s because there is no such thing as a textbook case with IBD. Nor with any condition. The truth is that everyone will be affected differently. Some people can’t leave the bathroom, others can’t go for weeks. But IBD is not just about toilet habits. To use John Green’s language from ‘The Fault In Our Stars’ here, (which, incidentally, I sobbed through – book and film!) there are a whole host of random side effects to IBD. Some things you wouldn’t believe could be linked to bowel disease, others which make perfect sense. Crippling abdominal pain, back ache, chronic and sometimes paralysing fatigue, joint pain, trouble with feet and skin and eyes, mouth ulcers that feel more like craters in your gums, hair loss, weight loss, weight gain, sickness, headaches, fluctuating temperature, indigestion which feels like it will never go away, bloating, bleeding, soreness, dizziness, anaemia, low immunity, rashes, nausea, loss of appetite, altered taste, osteoporosis to name but a few. Then there are the complications which are by-products of the drugs most IBD sufferers have to take, and the longterm damage these can cause.
The lists are endless and overwhelming. And for most of us, even on a good day, if we actually answered in honest detail when you ask us how we’re feeling, you would soon regret ever asking. I can count on one hand the number of people I am actually 100% honest with about my health. To put it in perspective, I was 27 before I finally decided it was ok to actually ask my mum for help occasionally – not to deem it as some sort of failure on my part if I didn’t have the energy to do my own supermarket shop sometimes. You will almost never catch me taking time off work. In fact, it is rare that I will say ‘no’ to anything on health grounds.
And in many ways that makes me my own worst enemy; I can’t expect people to understand the extent of my condition, if I always down-play it. But that’s the point. I am sure a huge percentage of the 300,000 UK IBD sufferers would agree with me when I explain this…we know how rubbish an illness it can be. We are well aware of how awful we often feel as a result of it. We know all too well how many further problems we are likely to develop somewhere down the line. We know it, because we live with it. We carry it around with us on a daily basis, no matter how full the lives are that we choose to lead. The last thing we need, is to be reminded of that in the pitying looks we get from people who are seeing us as our illness. That wouldn’t help. Nor would dwelling on, or listing all the negatives.
I readily accept, that I am possibly more optimistic than your average Joe. It goes hand in hand with that fighting spirit I was born with. And in truth, if I didn’t wake up in the morning and count the silver linings instead of the clouds, I would sink.
When people find out I was diagnosed at just three, their response is always the same : ‘Oh! So young! How awful…poor you!’ I am very quick to disagree. In fact, I think I was lucky. I don’t know any different. It is a way of life. Medication, hospitals, restrictive diets and intrusive scans and yada yada ya. And while we are on the subject of hospitals, I am forever grateful for the care and support I have had from so many medical professionals. People who have fought my corner for treatments ; moved heaven and earth to engineer hospital release in time for special birthdays or acting workshops I have doggedly refused to miss ; held my hand while I have learned to inject myself ; counselled me ; advised me ; cared for me. And only by generating wider understanding, will we raise the funds needed to ensure that level of care can continue.
So please, do your bit to help. Wear purple tomorrow (no hardship for me as it’s my favourite colour) and text PURP19 followed by an amount you wish to donate to 70070. It couldn’t be easier.
I suppose I am hanging onto the hope that there will one day be a cure. I hope there will one day be a way to guarantee protection from passing the defective genes down to our offspring. I hope that there will one day be a way to make life easier for patients, and the people who love us and have to watcn us suffer.
But in the mean time, I hope that reading this might just challenge a handful of people’s perceptions of the notion of ‘disability’ and ‘disease’…if there is one thing I think I am living, breathing proof of, it’s that those two labels don’t ever have to put a crimp in dreams or ambitions.
