Celebrate The Little Things… An Open Letter To My Chronic Illness 

Dear Chronic Illness,

So many people must expect me to be pretty angry with you. It’s easy to think of all the things you have stopped me doing like being too sick to go to school so I didn’t get the grades to be the doctor I always wanted to be or the ability to have children without IVF. I on the other hand would like to thank you for everything you’ve gave me. Over the last 10 years I’ve saw more compassion from strangers who turned into family like my whole medical team to learning far younger than most what makes a really great friend that I couldn’t imagine life being any different.

Yes things in my life haven’t gone to plan and it does taken me longer to get to where I want to go but I’ve gained such a unique perspective on life and after almost half my life I know I wouldn’t be me without you. I would like to think I’d have turned out the same way if I was healthy but in reality you shaped me in ways no one would have ever guessed. I’m now the person who enjoys the journey to get where I’m going, no longer wishing my life away because I know how precious those times you’re well are.

I’ve been thinking a lot about my life recently with the next surgery happening on Friday. It’s a scary thought, going through probably my 30th (that’s where I loose count) general anaesthetic because there is always the tiny risk of not waking up but knowing that my body is an incredible thing that has overcome sepsis and my intestines literally falling apart inside me. I like to think that I’ve came through so many more difficult things that this surgery, despite the pain I’ll be in, is something I look on as a much needed break to completely relax and let my body recover.

I guess you can say I get more than a little fed up of you at times. I lost count a decade ago over the number of times I spent my day crying due to pain, worries about my future or just being upset I can’t keep up with my peers but without you I’d never have managed to find a confidence in myself I didn’t know existed. I never would have guessed this time 11 years ago when I was in the middle of a month long hospital stay to try and get diagnosed and treat my malnourishment that one day I would be 24, kind of have my shit together in the extent of having a long term relationship, Little frozen embryo future babies and have found something I’m so passionate about that I happily spend my days raising awareness of IBD and ostomies. I went from being a timid, silent and terrified little girl from when I was diagnosed to now being a confident woman who is carving out a career in raising awareness and trying to make life a little bit easier for people like myself. I’m pretty sure 13 year old me who was just diagnosed would be horrified at the thought of speaking to hundreds of people at different public speaking events I’m asked to be part of and sharing so much of my life through this blog and my other social media’s (I’m pretty sure 13 year old me would be horrified that MySpace wasn’t as popular in 2018 as it was back in 2007!) .

I would like to thank you, Crohn’s Disease, for giving me an illness that made me grow so much as a person and for making me more open minded. I can’t imagine a life where I don’t know all about ostomies and pride myself on trying to learn as much as I can about IBD and the illnesses the people I have made friends with or admire have. I love hearing the stories of others who have chronic illnesses and being able to understand the amazing things they have done while dealing with some pretty horrible conditions. Every time I hear one I’m always given a little boost like YOU CAN DO THAT THING YOU’RE SCARED OF! and I’m forever grateful to others for sharing their own journeys online because it’s so inspiring to hear of your first hand experiences.

I’m pretty sure that the version of myself who was diagnosed was much less accepting and thought all ostomies were disgusting, unsanitary, terrifying and smelly alongside them being HUGE in my mind (don’t judge me I was a little girl!) and now that I’m an ostomate of 3 years I realise just how completely wrong I was with my pre conceived notions and that has made me even more determined to raise awareness because I’d never heard anything positive about ostomies before I was due to get one and met other ostomates online. Who knows, without you I could be totally ignorant and in my own little healthy bubble and have no idea about what so many people go through and live a much more quiet life.

In today’s day and age of medical advances where we know so much more about IBD than even 10 years ago I sometimes think of the day there could be a cure for you and I think if I was able to I would take it as I’m not someone who enjoys pain! But I would never forget the lessons I’ve learned due to being sick and I would like to think that has made me a better person. However, I am more inclined to believe that when there is a cure it’ll be after my time and I’m also completely fine with that. I’m hopeful that all the studies and trials I’ve been in over the years helps towards a cure one day so that people don’t have to learn lessons the hard way like I did with you. I hope they can live their life with all the awareness raised and be well adjusted to a world where chronic and invisible illnesses are accepted at face value and that they can live pain free lives without having a hospital as a second home.

In the meantime I’m going to spend my days doing my best to raise awareness and doing my best to be stable and healthy. I hope that through having you as such a large part of my life, it will continue to give me the drive to try and make the world a little bit better.

Like I’ve always been told, it might take me longer to do things but I’m going to enjoy the journey and celebrate the little victories that happen each day. They might be different to the average 24 year old but I’m determined to make the most of my new normal and make the most of the good times!

Jen x

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