Saturday, 22 November 2014

Interview with Thaila Skye about #GetYourBellyOut

As one of the founders of #GetYourBellyOut, what has been your involvement in the campaign? What sort of things do you do? 

It was the spamming of my belly pic that brought us all together initially.

Any important decisions are made as a team such as any new fundraising ideas, competitions, merchandise, announcements etc. 
We knew straight away that we would make a great team and have since developed our roles for more specific purposes depending on our strengths.
I work in online marketing, mainly social media, so I spend most of my time managing the Facebook page for GetYourBellyOut, interacting on the group and blogging. I had never blogged before the campaign began, it was just another communication method to help spread the word about the campaign and potentially reach a wider target audience. I have continued to blog as I have received some lovely responses from people telling me that I write really well and have explained exactly how they feel. Anything that makes even just one person feel less isolated is worth doing in my opinion. I also have control of the #GetYourBellyOut Pinterest account although I'm not particularly active because it's not really a relevant platform for our audience and the opportunity for interaction is minimal.
I work for a marketing company and the manager of our sister company (Sharon), very kindly bought our web domain and hosts our site completely free of charge! It just goes to show that it is not always what you know, it's who you know! I wrote the web content and Victoria produced a wonderful belly collage with just a small snippet of the thousands and thousands of bellies that have supported the campaign so far!
Lorna is our merchandise guru. She loves being organised and the busy merchandise workload is the perfect opportunity to make the best of her skills. She also attends any meets that she can in order to represent #GetYourBellyOut and again sell merchandise. 
Gem has control of the #GetYourBellyOut Twitter account and is constantly canvassing IBDers to become members of the Facebook group, as well making sure she regularly interacts with the already existing members of the group. Gem has been an avid fundraiser for Crohn's & Colitis UK for many years and it was her JustGiving text number promotion in one of the Facebook groups that prompted me to set one up in the first place. 
What sort of feedback have you heard from people after they see the belly photos, posters and merchandise?

The response from people has been brilliant. It still makes me very emotional to see people declaring on their own personal social media accounts that they have IBD or an ostomy etc as many of these people have been to embarrassed to share their story before! Every time someone posts their belly photo they always receive such an overwhelming response and show of support, even if to begin with they are only ready to share privately within the group. The bellies shared on the Facebook page are also always commandeered by people who they have never met and sometimes never even spoken to before! People who just want to show their support!
As soon as we began selling merchandise we realised what a success it would be. People snapped up the wristbands and car window stickers and began requesting other merchandise that they would like! 
Our awareness posters have had lots shares and the campaign info poster has been printed and distributed all over the world by our loyal supporters. 
For anyone who has just been diagnosed with IBD, what kind of support is there within the #GetYourBellyOut group? 

#GetYourBellyOut group members range from people who have suffered from a very young age to those diagnosed much in later life. There are members who have been battling for years and members that have just been diagnosed. Some have had surgery and some haven't, some are still in the process of going through tests to see if they have IBD at all and others are just supporters of the campaign, friends or family. With such a diverse range of backgrounds, any newbie to the IBD world will be welcomed with open arms and hopefully given advice on their personal situation by others that have been through the same or very similar. 
The effects of IBD are not just physical and it is often the mental support that people need the group for too. Everybody deals with things in their own way but knowing that you're not alone and that you have somewhere to talk openly with people who understand and won't judge you is of great importance. You can also ask any questions you like without feeling silly because at some point or another, we were all newly diagnosed with no knowledge of IBD. The group has so many members that sometimes the odd post may get missed but the rules which are pinned to the top of the group also include a list of all of the admin who are always on hand should anyone wish to have a question asked on their behalf, ask questions directly or just want to talk or rant. If we cannot personally help, the chances are that we will know someone who can. 
What has been the biggest challenge for you during the campaign?

Firstly, communicating purely via inbox is a challenge in itself especially when you've never met these people in real life. You don't know each other's humour or personality traits. I tend to be sarcastic a lot but if someone doesn't know that and isn't aware of the tone in which a comment was meant then it can easily get misconstrued. 
There have been a few big challenges along the way, for example initially when we first began it was a challenge to get people involved. Some people need to see others taking part before having the confidence to take the leap themselves and locating people via social media takes an enormous amount of time and energy, whether that be searching keywords such as IBD, Crohns, Colitis, Ostomy etc on Twitter or joining IBD Facebook groups and forums and then engaging with like minded people, willing to share their stories, bare their secrets and raise awareness.
At the start, whilst trying to build a following for the campaign it did suck an awful lot of time out of all of us to the point where we barely slept or ate and all ended up completely worn out. Finding the right balance between work, domestic duties, having a social life and running a campaign was one hell of a task!
Add to that the fact that Lorna had just had a resection and ileostomy when she joined the campaign. 
Gem had been suffering with her most recent Crohn's flare since February and I had been in pain for an awful long time with recurrent Pouchitis and what I suspected were strictures so we were all fitting in appointments, scans, camera tests and X-rays whenever needed. 
I am currently three days post op from my reversal to reconnect my jpouch. 
Healing really fast!!

This is the second lot of surgery since the campaign began (resection, jpouch revision and temp ileostomy in July).
Gem is currently in hospital after having a resection due to a bowel perforation just a few short weeks ago, and is having a hard really hard time recovering as her Crohn's is still active and small intestine inflamed. 
BUT, for me personally the BIGGEST challenge has been seeing people that I have come to care very much about being so poorly and not being able to help. It takes a huge amount of strength to wipe away someone else's tears whilst inside you're crying with them and for them.

Has your work on the #GetYourBellyOut campaign changed the way you view your own condition? Have you learnt anything new about IBD?

I did a lot of research into my condition and medications so have always been educated enough to hold my own when speaking to medical specialists and novices, explaining the ins and outs of surgical procedures, side effects, medical terminology and such to create a better understanding for those closest to me. I don't feel that the campaign has changed the way I view my condition but it has changed the way I view me. I had such a horrendous time with my first ileostomy that ever needing one again would have been the end of the line for me. I have been inspired by the #GetYourBellyOut supporters and the faith they show me they have in me eventually gave me faith in me too. As dramatic as it sounds, I think the bellies may well have saved my life. 

What has been the most exciting part about the #GetYourBellyOut campaign so far? 

I still get excited over the small things. Planning Twitter takeovers, or reading a positive mention in a blog or editorial. Each little milestone still has me buzzing with excitement. When the campaign began I never imagined we would end up where we are. The first twitter takeover - people actually joined in! Campaign videos that had me crying all the way through! Starting selling merchandise and people being so excited when they received them and then expanding the range. Starting the group and watching the members grow. Meeting and having the backing of national charity Crohn's & Colitis UK! We were thrilled at making £100 and now we're at over £15,00! 

Reaching over 5,000 fans on the Facebook page! Having the website built, never did I imagine such a thing! Even thinking of new ways to spread awareness that little bit further has me nearly wetting myself with excitement! 
And now, NOW we have the ball! A ball that will mark 1 whole years work and hopefully raise much more cash for charity and form some even stronger bonds between some really great people! 
In three words, how would you describe the #GetYourBellyOut campaign?

Inspirational. United. Family.

Finally, how do you see the #GetYourBellyOut campaign developing in the future? And is there anything coming up for people to look out for? 

We have the Birmingham Birthday Belly Ball (all the B's) coming up in March 2015 but unfortunately that's all I can tell you about for now! Sssshhhh! 
I honestly don't know how far we can take it but I would like to keep going for as long as it is humanly possible. I want to continue uniting like minded people with IBD, who want to help us achieve our mission and who want to support each other, dish out cuddles when necessary and cheer each other up on the dark days that we all have! I want to keep raising money until a cure is found and I want to raise awareness to the point where everyone knows what IBD is in the same way that everyone knows what cancer is. I want to scoop up every fragile little IBDer that is struggling and let them know that they never need to feel like they're fighting their battle alone.

There IS light at the end of the tunnel. That light is #GetYourBellyOut!

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