The NDA’s and #IBDnotIBS *UPDATED*

Firstly, I want to thank every single person who voted for me and endorsed me in the National Diversity Awards 2015.  I was nominated and shortlisted as a Positive Role Model in the Disability category.  It was an amazing thing to be shortlisted and to read through the hundreds of nominations made me cry out my own body weight in tears!  To know that I made a difference to so many of you was just mind blowing and that acknowledgment of the last two years of my life was amazing.

For two years I have run this blog.  I have spoken at events up and down the country.  I have been on countless radio shows, television programmes and in pretty much every national newspaper.  I have done all this through the toughest two years of my life.  In 2013 when my large intestine was removed, I was at my lowest ebb, I couldn’t imagine how life could ever improve.  The past two years have seen three major surgeries, months of rehabilitation and healing, so many hospital visits and stays, my body, mind and spirit have taken the hardest battering and life has been, quite literally, shit.

Yet I carried on.  Raising awareness at every step, talking about the most intimate and embarrassing details of my life because I want to make a difference to others, I want those who follow in my path to have it a little easier than it was for me.  So on Friday night as I attended the National Diversity Awards, it felt good.

As we got to my category, the nominees were read out.  My heart was pounding and I felt sick with nerves, every message I have received was running through my head as I thought about how, even in my darkest times, I had managed to make a difference to so many and now here I was, in a posh awards listening to my name and accomplishments being read to the hundreds of people in the room!!!

‘Sam Cleasby has worked tirelessly to raise awareness of IBS’

Wait, what?!!?!! No, fuck, they got that wrong! I don’t have IBS!!!

I didn’t win.  That was ok as I was up against some of the most extraordinarily inspirational people.  Just to be in their category was a blessing.  I was just honoured to be there!

But IBS?  I felt hot and embarrassed.  Tears were in my eyes as I realised that the past two years had done nothing to raise awareness when the National Diversity Awards couldn’t even get it right!!! I looked down to the programme given to all attendees and read the passage about myself.  There it was again.  IBS.  And worse still, they wrote that I had shown off my jpouch.  My internal jpouch?! Nope! I do not remember spreading my bum cheeks and inserting a camera up my anus for a photo shoot!!!!

My heart sunk.  I realised that despite all this talk of “under represented groups”, all the glitz and glam and celebration of diversity, all these awards had let people with IBD down.  I gulped back the tears at the thought that I had let you all down.  All the people I fight for, every person who has to live with this most debilitating condition, who face agony, bleeding, fatigue, diarrhoea, incontinence, embarrassment, humiliation, all of those people who I stand up for, they were all let down that night.

For some, it may seem like a small thing, but imagine if they had mistakenly called a group of Muslims, who had campaigned tirelessly for the rights of Muslim people, Sikhs?  Imagine if they had used the wrong term for a transgender person? Imagine if they called out the wrong race for those fighting for their under represented group?  Would those things be unimportant?

IBD is a tough disease, it is life long with no cure, patients have to take medication that is at times so harmful, surgery is commonplace and it sometimes kills.  IBS is a condition where sufferers have diarrhoea, it is miserable but not life threatening in any way.  There is confusion sometimes, and that confusion is really unhelpful to those with IBD as it lessens the importance and seriousness of the disease when it is confused with something far less dangerous to health.

I felt that there was no way the judges and the company as a whole could have read my blog to make these mistakes, how could they have read hundreds of nominations of mine yet got the name wrong? How could they be so confused over my jpouch when I had sent them all the information?  I felt done over.  I felt that I never had a chance of winning as they hadn’t even understood my illness so how could I have had a chance?  Well at least they got the cost of the tickets, hey!

I went back to the hotel room totally deflated and defeated.  The past two years of my life felt pretty worthless at that time and I had a big old cry at the shittiness of the situation.  Then I wiped my tears, pulled up my big girl pants and told myself to suck it up, buttercup!  This mistake wasn’t going to ruin my passion.  It wasn’t going to make me feel worthless.  It was going to make me stronger, make me shout louder and make me tell EVERY PERSON IN THE WORLD THAT I HAVE IBD, I AM NOT ASHAMED AND I WILL KEEP RAISING AWARENESS, I WILL STOP POO BEING TABOO!

It may not ever be trending, it might not make for a sexy headline, it might not be caught onto by the PC bandwagon, but I will never stop fighting for every one of the 300,000 people in this country who have IBD.  I will keep going and shout louder than ever before!

I did a video on the night of how I was feeling, it would be great if you could go take a look and share with #IBDnotIBS

You can find it on the So Bad Ass Facebook page here.

The response from the NDA people has been very underwhelming, the owner replied on my Facebook page saying that they only used info from the nominees, suggesting I had got my own illness wrong.  This is the only contact I have had, no emails, no phone calls.

I feel bad for slating the group as on the whole they do an amazing thing, the people I met on the night were all so inspiring and to be in a room with so many people who just want to do good was fantastic.  But they got this wrong.  And they don’t seem to care.  And that breaks my heart.

So I want to end with an apology to you all.  I am so sorry that despite my best efforts, those of us with IBD were let down on the night.  I am sorry that all this effort didn’t help to raise awareness amongst all these people, I am sorry that my voice wasn’t louder, my fight wasn’t stronger.

But I promise you, this will only make me fight harder.

Love Sam xxx

***UPDATE***

I received an email apology that said

“After investigating into this, an extract from your original nomination was used to contribute to your profile, and it has come to light a number of mentions of IBS in your votes may have caused our writer to make this error. However, upon saying this we take full responsibility for this mistake, a thorough proof read should have been carried out in order to avoid this inaccuracy from happening.”

They also offered for me to write for their blog to raise awareness, which I will tell you all now, I have turned down. 

They said I had IRRITABLE BOWEL DISEASE. That’s not even a disease!!!!!

WTF.  An apology for getting my disease wrong, where they then get my disease wrong again???

I let them know their mistake and they changed it.  Only they got it wrong AGAIN!!!

They changed the I in both IBS and IBD to INFLAMMATORY!! Its like they don’t care at all, right???

Third time lucky and with the help of some irate folk who tweeted and emailed them, they managed to get it correct.

Though there is still no mention of the fact they said I posed with my Jpouch out!!

I have had a phone call to apologise, but to be honest, it is as I tell my kids.  Sorry is just a word.  Their actions show an inability to listen or learn and a total lack of understanding.  The fact that the last two changes came AFTER the phone apology says a lot.

If you mess up, then make sure your apology doesnt have the SAME MISTAKES AS THE EVENT YOU ARE APOLOGISING ABOUT!!!

I don’t feel any lesson has been learnt here and I am fuming. Their initial email said that “a thorough proof read should have been carried out in order to avoid this inaccuracy from happening.” yet they then made mistake after mistake after mistake so they didn’t learn any lessons there.  It feels like an absolute piss take and I am just in disbelief.

I was so excited about being nominated and I appreciate the time that all of you took to endorse me and say such wonderful things, but I wish I had never been nominated.  And that makes me so sad.  I wish I hadn’t wasted my money in buying tickets, paying for a hotel and all the costs associated with traveling to Liverpool and having the day off work.

I feel embarrassed, hurt and angry.  And that sucks.

Sam xxxx