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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.

sam cleasby national diversity awards nda ibdnotibs blogger

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!!!

sam cleasby national diversity awards nda ibdnotibs blogger

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!!!!

sam cleasby national diversity awards nda ibdnotibs blogger

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?

sam cleasby national diversity awards nda ibdnotibs blogger

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!

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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!

sam cleasby national diversity awards nda ibdnotibs blogger

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.

sam cleasby national diversity awards nda ibdnotibs blogger

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. 

I do charge companies for my writing and blogging, I do this to fund my time that I can then put into volunteering for charities and supporting people with IBD full time. I don’t have the time or inclination to write for this company for free.

For the record I had to send them an awful lot of information and even if people mentioned IBS in their nominations and endorsements, it should have been clear from reading my blog and all that info I sent over that I have IBD. The jpouch comment, I have no idea on!!

I am still very embarrassed, upset and angry about this whole thing. I feel like I can’t have been seriously considered for the award if they didn’t even read the blog in which case it was an awful waste of money and time to go to Liverpool (tickets were expensive, hotel room and travel were all covered by myself) and sit in a room full of people who were told completely incorrect information about me and therefore no awareness was raised that night!

I pointed out that nothing has been said publicly and then they issued a public apology.  That had a BIG mistake in it…

nda get illness wrong

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!!!

nda get illness wrong

 

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.

nda get illness wrong

 

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

 

To the woman who tutted at me using the disabled toilets…

Dear lady who loudly tutted at me using the disabled loos,

I know you saw me running in, with my able bodied legs and all. You saw me opening the door with my two working arms. You saw me without a wheelchair. Without any visible sign of disability.

You tutted loudly as I rattled the handle with my hands that work perfectly and my able voice call to my kids that I’d be out in just a minute.

My lack of wheelchair may have suggested to you that I was some lazy cow who didn’t care. Some inconsiderate bitch who was using something I wasn’t entitled too. (I actually carry a card to explain that I’m entitled to and have a disability key if you’d have cared to ask). You may have seen my face blushing as I caught your eye and assumed I was showing guilt at blagging the disabled loos.

The fact is that I have no bowel. I have a pouch formed from my small intestine which can’t handle volume and so I have to go to the toilet and poo several times a day. My lack of large intestine means that my stool is totally liquid as I have no means of absorbing the fluids in food and so its really hard to hold it when I need to go.

I sometimes have accidents which means a large toilet that has a sink right by me means I can clean myself up when things go awry.

I hate having to use the disabled loos as I have to deal with people like you staring, nudging, tutting. And whenever I can, I use the ladies toilets. Just so you know, disabled loos usually smell bad and don’t seem to be cleaned as often or as well as the ladies and so I wouldn’t choose this option unless totally necessary.

Whilst I’m at it, I’d like to address the cleaner in the supermarket ladies toilets I used this week. As I ran in, knees together, bursting through the door and running to the cubicle, I’m sorry that the noise of my (lack of) bowels made you burst out laughing.

I can actually take the sniggering as since I had a pouch made from my small intestine because my disease ridden colon was removed during surgery, the noise I make when I defecate is hilariously loud. Seriously, I get it. It’s comedic in it’s volume.

But before you ran outside the loos and called to your friend “OH MY GOD! You should hear the noise in there!!! I wouldn’t go in if I was you!!!!” Perhaps you could have noted my daughter who was waiting outside with our trolley because her mum had had to leave her stranded to run to the toilet. Perhaps you could have stopped and heard me sobbing with pain because the acid in my stools has no way to be neutralised because I don’t have a large intestine and so opening my bowels actually burns my skin.

Perhaps you both could have shown a little empathy, a little compassion, a little understanding.

Poo is funny. Disability is confusing.

I get that.

But humanity and care for fellow human beings is a choice.

To everyone else reading this, the next time you see someone who doesn’t “look disabled” using a toilet.

Or someone bursting through and crashing into the toilets noisily.

Take a moment. Remember that not all people who have the right to use disabled toilets are in a wheelchair. Some of us have a jpouch, a lot of us have an Ostomy bag that needs emptying and changing with the use of space, a sink and a bin. And even more of us just don’t want to shit our pants in public.

Think about the nearly 300,000 people in this country who have inflammatory bowel disease (not to mention the huge number of people with IBS!!!) who need to use the toilet urgently, noisily, smellily…

It’s an embarrassing enough thing to deal with before having to see disapproving looks or hear your laughs and jeering remarks.

Be kind yo…

Peace out

Sam xxxxx