But you don't look ill....

Sometimes, i wish i could turn my body inside out for people to see what's going on inside. 
Now, I've become a professional in answering 'I'm fine' to whenever anyone asks how i am. I've realised that Instead of faking being sick (like some people assume).. in reality I'm actually really good at faking being well! 

This is for many reasons, however mainly because who actually wants to hear me babble on about something that can't be changed. Also, i learnt to do this early on and i realised its because i don't want to make other people feel uncomfortable... stupid right?! I don't want other people to feel awkward when i'm discussing my illness. I can sit at a table with the biggest smile on my face being my usual stupid self chatting away, when really my stomach is in knots and I can feel myself bloating like i'm several months pregnant.. but as long as everyone around me feels comfortable, that's ok. 

Sometimes, it gets too much and i just blurt it all out that i'm not ok.. that i'm sick of eating a salad for my lunch and coming home with a solid round stomach when everyone else has the opposite effect. That I'm sick feeling absolutely EXHAUSTED to the point where i will sleep at any given opportunity, and I don't mean I'm tired I mean I'm fighting constant fatigue where my eyes blur and my brain goes 'foggy'. I'm sick of having to plan where the toilet will be when i go on a simple outing, and feeling embarrassed when I've been once and need to go again 10 minutes later. I often make jokes about it and I've realised again this is to make others feel comfortable rather than myself, its a covering up mechanism that works well because people can laugh with me, we can laugh about what I'm 'coping' with and the bigger picture is overlooked. How many other 25 year olds need to plan where the toilets are, or pack an extra toilet roll and a hot water bottle everywhere they go for an overnight trip?! - This for me is normality along with my dosette box in my handbag with my 11 tablets a day (on a good day).

Anyway, this is the first page behind 'you don't look ill' with a basic overview (huge rant) of daily life with IBD. This is often the side that people do not see, partly because I choose to cover it up and the bonus of living by yourself is, no one has to see it. I've battled the other peoples ignorance towards anything that doesn't directly effect them, "oh you've got stomach ache again". The physical and emotional implications of this condition are unbelievable and 8 years on I'm still discovering and learning myself, as I will continue to do for the rest of my life. 

I tell myself every time I'm having a bad day and a flare up that 'there are people much worse off than you, you are lucky' and I truly believe that I am lucky. However I've also realised that I am allowed bad days and I am allowed to feel like the only one in the world that knows this feeling, sometimes. 

My Diagnosis

"Everything is super important, until you are sick. Then you realise there was only ever one thing that was important.. your health" 

I actually remember this time of my life so vividly, I had bleeding each time i went to the toilet for months before i actually told anyone. 

Obviously, being the medical professional that i am, i googled my symptoms and reassured myself they would 'disappear' I was 17, at sixthform with a healthy social life... who has time to be ill?! 

The loss of blood had caused me to become severely Anaemic and Iron deficient meaning I experienced muscle weakness, cramps and pain, these specifically in my legs. I used to have a fair walk to sixth form on the days my mum was working and I remember ringing my friend crying in pain and I'd only made it to the end of my street. At this point, obviously I hadn't told anyone what was going on so I got the typical 'oh you're just lazy' response. 
I remember being really skinny and so so pale, no amount of fake tan or bright orange Sally Hansen 'airbrushed legs' was hiding this. 

I finally told my mum and that was it.. straight to the Doctor I go, followed by a trip to A&E as my haemoglobin levels were dangerously low. I was admitted for 7 days and had various intravenous drugs and tests before the official diagnosis.  I was due to be going on my first girls holiday to Malia the following week.. so you can imagine my reaction when the consultant tells me I can't go. Anyway, I had my suitcase packed for what felt like a year, so I had the ultimate strop and was adamant I was not missing this holiday (still the absolute best holiday to date FYI). 
My mum sent me off with my 28 tablets a day sectioned into small money bags so i couldn't get confused or forget any. I remember the boys in the room next door thinking we were some sort of drug dealers! 

Admittedly a week of partying wasn't the best idea and i was bed bound for the following week. I had to sell my V-festival ticket which felt like the end of the world as our first group festival together. 

I still hadn't told any friends what my condition was or what was actually going on, I guess it all came down to embarrassment and the simple fact I didn't really understand it myself, I'd never heard of Crohns or Ulcerative Colitis and suddenly it's something I'd have for life. I remember my 3 best friends visiting me at home and I just said 'I've got ulcers in my stomach' which at the time was much easier to talk about than the reality. 

The truth is, no one asks to be ill. No one imagines or expects to have a lifelong illness, and it could literally happen to anyone, at any moment. There's still certain things I won't discuss about my illness and yes I do still feel embarrassed at times, but I remind myself that I didn't ask for or cause this and nor can I change it, so let's embrace it, discuss it and make it more 'normal'. 

Hello!

Ok... so this is a little strange, I suppose I should introduce myself. 

I'm Jordan, I'm 25 and I'm battling an 8 year diagnosis of Ulcerative Colitis an Autoimmune disease. Hence the name - "Autoimmune and often the loudest in the room!" (anyone that knows me well enough will relate to the last bit!)

My main reason for starting this blog is to discuss my diagnosis, my on-going treatment and to help educate those who simply have no idea what IBD is. Oh, apart from the fact I just wanted to feel totally like Hilary Duff in 'The Perfect Man' when she sits on her window sill with her laptop "Hey all you bloggers, its me the girl on the move"...

Anyway, unfortunately I don't have a cute window sill seat to stare dramatically out of or emotional background music to set the scene. 

I've thought about writing something for ages, however never really had the confidence to do so. Since my diagnosis I've been part of the Crohns and Colitis online forum but I've never actually posted anything myself. However, I find other peoples posts so inspiring and reassuring. More recently I've been reading other IBD sufferers blogs, following Instagram accounts and finding relatable content which really led me here, writing my own. I figured majority of people wouldn't be bothered/have the time to sit and read my story (not like me to babble on!) BUT if just one or two people did, and it helped them.. even if it just helped someone to understand the condition and what those with IBD actually face daily then its worth it. Also, its a great release for me so win win! 

So, if you've got some time to kill...then read on 😀💜