1 April 2014

Campaign for change!!

Firstly I have a little bit of grumbling to do as we all know that both keeping emotions in and stress is enough to make a person with Crohn's Disease or Ulcerative Colitis feel rather unwell. I'd like to get a few things off my chest! This is not my usual style of blogging but some things need saying so do bare with me. You are more than welcome to disagree, though do remember the following saying.....

You may be wondering why I haven't updated my blog of late though as you may have heard from my previous post, I have been on a little bit of a campaigning mission. If you missed my last post then simply CLICK HERE to get yourselves up to speed with the latest goings on.

I'd like to share with you all what I have learnt from the last week of the #GetYourBellyOut awareness campaign that's highlighting both Crohn's Disease and Ulcerative Colitis. I'll begin with what's annoyed me and we shall progress onto a lighter note later on in the article.

People are SLOW to help. I can't begin to tell you the STRUGGLE it has been to get anyone to take notice of the rising awareness campaign. I stayed up for hours, worked tirelessly through fatigue, tiredness, a puffy hand from so much tweeting/blogging/typing. I gave up sleep, ran on auto-pilot, skipped meals and accidentally almost took my medication twice due to my mind being else where. You name it - I did it! I pleaded with writers/reporters/bloggers to all take up the story all of whom rather unkindly slammed the door firmly in my face! Unless you write about fashion e.g. the ever changing shape of a bowler hat - no one wants to know.

People hijack a good idea. Due to receiving no support whatsoever I was forced into a position where I had to write the first blog piece myself as I felt the hard work of the strong, brave, inspirational people who took the time and difficult step to post their belly photos online deserved some respect, recognition and to have their stories heard.

However NOW that the campaign has gathered great momentum and achieved wonderful success it seems EVERYONE want's to get involved. There are people across the world chipping in to try and get a piece of the #GetYourBellyOut action. Those who weren't keen on the idea are now clogging up my news-feed - funny huh?
I am of course not talking about the lovely bloggers who have been a part of the campaign from early doors and kindly written up their own posts about the campaign. Huge shout out to you all, there are simply too many of you to mention but I appreciate every single one of you! *mwah*. Though as time progressed it seems those who at the beginning shut the door in my face now pull in readers by featuring the campaign. 

People try to SQUASH an idea that is not theirs. Jee whizz where do I start with this one! If you happen to not agree with a campaign then PLEASE keep your downtrodden opinions to yourself. If someone goes out of their way to try and encourage discussion/ awareness on a topic that you're unfamiliar with then put quite simply; politely decline to comment. Instead of putting your down cast opinions onto other people.

Propaganda goblins. I am going to partly embarrass you because in my eyes there is such thing as ETIQUETTE, unspoken rules which allow one-another to share mutual respect and understanding for each another. If you gatecrash a hashtag campaign in attempt to flog your own products/services you are HIGHLY out of order!- not cool! Build your own foundations instead of benefiting from the hard work of others.

Do your research. This one really disgruntles me! It is holy POINTLESS to write an article on such an important campaign unless you attain the facts first. People have worked HARD, donating their own time and effort into this campaign only for you to give the campaign a write up without giving those hard working people credit - YOU ARE OUT OF ORDER. You are simply gaining readers for the purpose of jumping on the band wagon. Don't just write about something because it is the talk of the town. Again - not cool!

Big organisations/charities are not doing enough. I whole heartily understand that those big charities set up to help/support people with IBD are doing all that they can to raise both funds and awareness. However, from a UK point of view unless you sign up to or know where to look for these national charities it seems that you fall through the cracks. Not once from a personal stance have I seen a tv campaign, fundraiser or poster in any shop window. I have knowledge that they take place though I have never come across any in my 5 years of living with Ulcerative Colitis. Hence why people are splitting through the net and more awareness needs to be raised.

So.... what have we learnt? that people are sometimes rude, cheeky and outspoken!
Though I am happy to report that I have gained so many more positives than all of the negatives listed above.

Since I blogged last the #GetYourBellyOut team has somewhat expanded from Sahara and I, to now include Gem (briefly mentioned in the prior post) and Lorna. The awareness campaign has been such an outstanding success that we simply couldn't keep up with all of the photos posted, kind messages and tweets. I am still trying to sort through the backlog so sorry if I have missed anyone!

We also decided to host a TWITTER TAKEOVER. A feeble attempt to get the hashtag trending for one hour and to get ourselves noticed a little more.

Ok, so my graphics suck - my pc is still broken so bare with me :)

As time grew closer to our takeover attempt which we had been advertising all day there was no way of knowing how many IBD'ers were out there listening to our call. The closer we came to the kick off time the more worried, anxious, nervous and utterly queezy the whole team felt. Had we done enough? Did people know about it? Would anyone join in?

9 pm came around and we all sat in anticipation for the first tweet to roll in; and roll in it did. BINGO! We have one person on board :D ... then came another tweet...another..and more still! There; in front of our very eyes were tweets with the sweetest of saying all about how the campaign had made the participants feel. In rolled things like "I feel STRONG, UNITED, BRAVE, SUPPORTED, NO LONGER ALONE" etc. Fair to say at this stage the whole #GetYourBellyOut team were in floods of tears!!
Relief? that people could actually hear our plea for change? Maybe. Though these tears were due to the fact that we were so PROUD of all of the BRAVE,STRONG and INSPIRATIONAL people who had opened up (some for the very first time) and allowed us into their world. To see how tough life with Crohn's Disease or Ulcerative Colitis can be. Not only opening up to us...but to THE WHOLE WORLD.

The more photo's that came in, the braver those around them felt and in flooded more photographs. Photos from people who had said those before them had inspired them to talk about their journey with IBD. As did the photos that were posted after them. You all did so incredibly well at making a HUGE change. Over the past week I have seen tweets from Canada, USA, Spain, Denmark etc. all saying the sweetest of things.

"Look what campaign they have going on in the UK"
"We should have a campaign like this over here!"

Which makes me feel incredibly proud not only that the UK have taken the bold step in opening the door to change/discussion about Crohn's Disease and Ulcerative Colitis but that other countries are listening. They too want to support the campaign and include their photos too; which will also hopefully bring about change in their countries. For at the end of the day no matter who you are or where in the world you are from, if you are fighting the awful life changing illness of IBD then we are all striving for change and for the same goal TOGETHER - UNITED- AS ONE.

So this past week has also taught me people with IBD are AMAZING, BRAVE, SWEET, UNITED, EMPOWERED and DRIVEN in the battle for change!! A HUGE thank you to anyone who posted a belly photo, donated or helped spread the awareness message.

I'll now leave you with some comments that came in about the #GetYourBellyOut awareness campaign. It has been a long long week and my brain has almost given up working but my heart is filled to bursting with pride. Xx

#GetYourBellyOut is the best initiative I've seen in 30 years as a Crohnie; great job guys!!!! :) Crazy respect for all those involved with the #GetYourBellyOut campaign Well done for the #GetYourBellyOut campaign for IBD fighters everywhere! Brilliant to see colitis and crohns awareness! X Looking at the pictures for the chrons #IBDawareness #GetYourBellyOut campaign, so many brave chrons sufferers out there! Its defo raising awareness and inspiring :) Proud of everyone who participated in #GetYourBellyOut. I hope it showed others the struggles we face! :) Alot of funky bellies flying around. Well done to everyone involved in #GetYourBellyOut. An amazing job! It takes courage to show your scars. Well done everyone. Stay strong. #GetYourBellyOut 

Yes the madness continues... to read EVEN MORE about the campaign then simply CLICK HERE to read the latest campaign progress report.


  1. Don't allow yourself to be disheartened by the downs, just be lifted by the ups and there's plenty of them I cannot believe how much you have raised and how much awareness there is out there because of 'bellies' now, and how amazingly brave so many people with IBD are. Go IBD warriors :O)

    1. I am SO OVERJOYED and PROUD of everything we have achieved as an IBD community :D Xx