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HUGE news!

I have been desperate to share this news for a few months but had to wait for everything to be confirmed, but I have some HUGE news!

In February 2018 I will be traveling to Munich, Germany and co-hosting an amazing event to raise awareness and money for Crohns and Colitis UK and Lupus Foundation with none other than Hollywood actor Ian Harding from Pretty Little Liars!!

You can find more information and buy tickets here.

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Just in case you can’t read German, here is a translation from the website:

“Autoimmune diseases Lupus and Crohn’s disease Crohn’s are a treacherous affair: often doesn’t show the suffering people go through, and yet a diagnosis has serious consequences for life.

To raise public awareness of the incurable disease, actor Ian Harding – coming known from the hit series of Pretty Little Liars and multiple winner of the teen choice awards – and the renowned British Blogger Sam Cleasby host an exclusive benefit concert in Munich.

Together with Cleasby, Harding leads through the program of the evening. Afterwards, you can meet Harding and Cleasby personally, when they will be signing event-designed T-Shirts, posters and flyers to  all concertgoers.

The proceeds of the event go to the organisations Lupus Foundation of America and Crohn’s and Colitis UK, whose Ambassadors are Harding and Cleasby.

The Bands Splashing Hill, Liann and a third act which is yet to be announced provide the musical accompaniment. Supports the event is through the European Crohn’s and Colitis Foundation ECCS, by the Director of the Crohn’s and Colitis Centre in Munich, Prof. Dr. med. Thomas Ochsenkühn. This serves the medical backgrounds of the events, which will also be addressed in the context of a discussion panel with Cleasby and Harding.

Regular updates to the event can be found on the Facebook page of splashing Hill.”

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I am over the moon and so proud to be part of this awesome event and can’t wait to team up with Ian and give a great show! It would be amazing to see some of my european readers over there, it’s going to be a blast!

I have done talks around the world, but this will be my first time speaking in Germany and so I am really excited to get to hang out and get to know some badasses from around Europe.  I am always so proud to be asked to speak and this will be my first time hosting an event, so I just hope I do you all proud.

I hope to see you there!

Sam

Talking to Scouts about poo

One of my favourite parts of everything to do with So Bad Ass is that I get to do talks all over the world about IBD, ostomies, disability, parenting and body positivity and so when I was asked by our local Scouts group if I would come in and talk to their Cubs about disability, working for a charity and my experiences to help them get their disability awareness activity badge, I jumped at the chance.

Then it got to the night itself and despite the fact that I have spoken in front of rooms full of the most respected doctors in the world, in front of hundreds of people at events all over the place, the thought of a bunch of 10 year olds was terrifying!!

But I knew I wanted to go ahead and so I went in and spoke about my illness, about my ostomy bag, scars, disability and lots about poo… There were some “urghhhhhh” comments, there were times when they asked weird questions, but it was all good and so great to talk about something that is very much seen as taboo.

I spoke about my work for Scope and their End The Awkward campaign, about how lots of people find it difficult to speak to a disabled person because they feel awkward and worried that they will say the wrong thing.

We spoke about examples of disability, and they blew me away by saying that one of their grandparents had an invisible disability in the form of dementia and I was so pleased that they had such a great level of understanding.  We chatted about how difficult communication can be for some people and how we can find ways to make it easier.

One child raised his hand and told me he had scars like me, that he’d had heart surgery when he was a baby but his dad told him he could tell fibs about the scar, that he won a fight with a ninja, that he survived a shark attack, that it was a Harry Potter scar… I love that! I often tell people I fought off cthulhu…

In short, they were fantastic and I think they all went away with a better understanding of disability and so it was all worthwhile.  I even got my own badge!  I was one of several people to come and talk to them over a few weeks, they had learnt some sign language, had a session with a man with a sight impairment and had talked about mental health too.

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I did find out that 10 year olds are awful/brilliant. I said they could ask anything and I’d try my best to answer. One boy raises his hand, waving, desperate to ask his question. I thought ‘how brilliant! I’ve really reached him!’

He said “why is your hair half orange and half black?” 

Great.  Burned by a 10 year old cub scout…

European Crohn and Colitis Organisation and Boehringer Ingelheim

I was very pleased to be asked to talk at the 12th congress of the European Crohns and Colitis Organisation in Barcelona.  I will be attending next weekend and speaking with a panel of people from around the world about what life would be like if everyone in the world had IBD.

 

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The Boehringer Ingelheim group asked me to be part of their innovative talk hoping to encourage a new way of thinking for medical professionals and pharmaceutical companies.  They hope a discussion where the patient is put first will make people consider what it would be like if IBD wasn’t an illness but the norm.

What would treatment look like? How would buildings be designed? What would work, social and personal life be like for the world? With this thinking, perhaps patients with IBD will be more at the forefront of medical professionals minds when they are treating us.

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I love public speaking, it gives me the opportunity to use my experiences to educate others and to offer support to members of the public.  This event is a little different as it is aimed at medical professionals, I hope by taking part that I can help to shape the way doctors, surgeons, nurses and health professionals look at their future IBD patients.  And for that I feel very grateful, honoured and proud.

 

Sam xx

So Bad Ass goes to Parliament

On 4th November this year, I had the honour and privilege of going to Parliament with Crohns and Colitis UK to speak to MP’s and Peers about life with IBD.  It was a fantastic experience that I will never forget and I hope to repeat again.

Raising awareness and being a health advocate is everything to me and my ability to share my thoughts through this blog, writing for other publications, writing my book and speaking at events all over the UK is something I am hugely passionate about.  I LOVE what I do and I am so proud of my work.  But going to speak to the people in power, those who run this country, who I can educate to then help thousands of their own constituents is just amazing.

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I love the work of Crohns and Colitis UK and I am so proud to volunteer for them both on a local and national level and it was just a fantastic event to be part of.

I was quite unwell during the lead up to this event and on the day I was struggling with pouchitis but decided to push through as it was so important to me.  I met the amazing Carrie and David Grant who are ambassadors of the charity and got to hang out with fellow IBD activists Charlotte Guinea and the Get Your Belly Out team.  What was very interested and helpful was to speak to all these people about my own personal experiences and learn about theirs.  Both Carrie and Charlotte also discussed how they were currently unwell and we had a good old whinge about how IBD sucks.

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I spoke to many MPs from all over the country and was over the moon to hear that over 80 MPs and peers came through the doors to learn more about Crohns and Colitis Care; the newest information pack produced by CCUK to help patients understand what they have, what they are entitled to and how to get the best care.

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The people I spoke to seemed genuinely interested and cared about their constituents, they asked many questions and we discussed how they can help.  A big thank you to Sheffield MP Harry Harpham, who has been in touch through email and though he couldn’t attend on the day as he had previous engagements in Sheffield, sent his parliamentary researcher to find out more.

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What struck me was the motivation and strength of the volunteers and ambassadors, as we talked about our current illnesses, medication and treatments, I was very aware of the sheer heroism it takes to attend these events and raise awareness when you feel so dreadfully ill.  Ironically all three of us (Carrie, Charlotte and myself) all ended up back in hospital within a week of this event which gives you an idea of just how poorly we are.  But when you look at these photos, it is easy to just see 3 smiling women.  The reality is that we are 3 women who despite our illness, keep striving to make the world an easier place for those who follow in our health footsteps.

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I hope that all those MPs and Peers really took on board what I, and other ambassadors, shared with them.  I hope they learnt something and will know better how to help and support their own constituents and how to signpost them to Crohns and Colitis UK.

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I know that on that day I carried in my heart the voices of all of you lot, your words of pain and struggle rang in my ears as I spoke to MPs, your concerns, your anger, your needs were voiced through my mouth and I hope I did you all proud as an advocate for all those with Crohns and Colitis.

 

Sam xx

Why you should go to support groups

I do quite a bit of public speaking about life with IBD, stomas, jpouches and also self esteem and body confidence. I also volunteer with Crohns and Colitis UK and IA Support at events all over the UK.  And the one thing that tends to be the same at these events is the lack of younger people attending and I think it is a real shame.

I understand that there is so much support online nowadays, and I also get that going to a support event in person can be a terrifying experience, but I do believe that person to person support, that real life connection is irreplaceable by chatting online.

When I had my first surgery and had my ostomy, it was suggested that I attended a Stoma Open Day at the local hospital to meet other local ostomates and see all the different products available to me.  I went along and entered the room, so nervous that I was shaking.  I nearly turned back a few times, the idea of going into a room of strangers was almost too much to bear.

stoma ostomy ileostomy colostomy ibd ulcerative colitis photo shoot

I think I was the youngest person there by 20 years.  That sucked.

As I walked around the stalls I was asked twice who I was with, the assumption being that I was there to support an older relative.  It really dented my confidence and reasserted this awful feeling that I had an “old persons disease”.

It made me realise that it is a vicious circle.  A younger person attends these events and feels out of place and so doesn’t return, meaning the next younger person who arrives feels exactly the same.

This is why I feel the need to speak out, make a call to arms, to ask all you younger folk (and by younger I mean under 50!) to try out an event local to you.  It isn’t easy but I assure you that having attended many over the past two years, the feeling I walk away with after spending time with people who know exactly how you feel, after talking openly to people about things you may shy away from with your friends and family, that feeling is good.  It’s inclusive, it’s helpful.

That feeling I had at the first event made me want to make things better for others.  This blog, my talks, the things I discuss in the media is all part of a plan to raise awareness and make people be more understanding that chronic illness can strike at any age and that we need more support for all.

I will be at the Stoma Day this year as a volunteer for Crohns and Colitis UK South Yorkshire group, so if you are in the area, please come along, you are guaranteed to see at least one smily face and I would love to chat and help you make other connections.  It is terribly advertised and so you may not even be aware of it.

public speaker about self esteem ulcerative colitis crohns ostomies colostomy ileostomy jpouch ibd

 

It is on 5th October 2015 from 10am – 3pm at Hillsborough Arena in Sheffield and is organised by Sheffield Hospitals.  If you have an ostomy and live in South Yorkshire, do consider coming along.

As I said I volunteer for the South Yorkshire group of Crohns and Colitis UK, we are a team of volunteers who offer support to sufferers and their families, do fundraising and generally getting the name of CCUK out there, especially in South Yorkshire. The team can take up as little or as much time as you’re able to, we’re grateful for any help. So if you feel like coming along, even just to see what we’re about, then we’d love to see you.  We are having a meeting this Thursday 17th September in Sheffield, all are welcome if you are interested in helping out or hearing more.  You can find the event here.  We are ever so friendly and we are a laid back group so please think about getting involved.

I do a lot of this stuff because I really do care, I want to make a difference.  I honestly believe that through speaking out and talking at events, we can help all others who follow in our path.  What we go through as people with IBD is tough, we fight an illness that tries to ruin every part of our lives and the worst thing is the strangling silence that wraps itself around our throats and stops us speaking out.  Meeting others who are going through the same thing makes life a little easier, it stops that feeling of isolation, of feeling of being alone.

So think about it, have a look at local events to you and consider attending just one.  If we all do that, imagine the army of support we could create!

Helping others and helping yourself.  Get involved.

 

Sam xxx

Pelican Live Your Life Roadshow – Preston

I will be talking at the Pelican Live Your Life roadshow in Preston on Sunday 5th July talking ostomies and body image.

At Bartle Hall from 11-3, Come along and meet the Pelican team, chat to nurses, and attend some great talks. It’s a must for people with an ostomy, carers, family and friends. I’ll be doing my talk once in the morning and once in the afternoon so if you’re near Preston, do call in.

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Feel free to drop by with your family and friends, anytime between 11am and 3pm. If you have any queries, or would like to confirm your attendance, you can contact:

Email – ku.oc1512957343.erac1512957343htlae1512957343hnaci1512957343lep@g1512957343nitek1512957343ram1512957343
Freephone – 0800 318 282

The guys at Pelican are super friendly and so easy to talk to, it’s well worth getting in touch.

Sam x

Rosie Batty: Silencing those who speak out

In February 2014, 11-year-old son Luke Batty was murdered by his father, Greg Anderson at cricket practice in Melbourne, Australia.  It made worldwide news and society was shocked and appalled at the violent attack from a father towards a son.

His mum Rosie Batty became an advocate for female domestic violence victims and campaigner for making changes to government processes relating to the protection of women and children and she established the Luke Batty Foundation and Never Alone to assist women and children impacted by domestic violence.  Her courage, strength and bad ass spirit helped her to become the 2015 Australian of the Year.

She speaks out at events and to the media about the horrific experience of losing her son and is a domestic violence campaigner.  She uses her life to bring the conversation of domestic violence into the limelight and I think her selfless efforts are inspirational.  She is using her pain from an experience that many couldn’t even imagine to make a positive difference to others.  What a hero!

So why is Mark Latham, a former Prime Ministerial candidate trying to shame her into silence?

In his column for the Australian Financial Review, Mark Latham said of Rosie’s public speaking events;

“How did Batty immerse herself in such company, wheeled out at business functions to retell the story of her son’s murder in February 2014? There was a time, in the dignity of working class life, when grieving was conducted in private”.

How dare he!

What Rosie has done isn’t about a lack of dignity or respect to her son, the fact that this man feels he can silence a woman says more about him than her.  Her decision to speak out and make a difference is saving lives.

With her words other woman may find the strength to ask for help, mothers may leave abusive partners for her children as well as herself, she is teaching society about the warning signs and is publicly telling the government that more support is needed.

But when Mark Latham comments saying that this is a ‘private issue’ and ‘undignified’ he is creating a conspiracy of shame and silence and putting lives at risk.

This story struck a chord with me as I write about illnesses and treatment that can be embarrassing and ‘impolite’ to discuss in public, I spend most of my life either writing or speaking about poo and have faced others who believe it is undignified and should be kept private.  I never thought as a child that I would have a career in talking about poo, but this is where I am.

The experiences of Rosie Batty are incomparable, I am not putting losing a child in the same league as having an illness or surgeries, but the act of speaking out about something that others believe should stay private is similar.  I write, I speak out, I do all this to make a difference and help others.  I use my pain and suffering to reach out to those who are suffering and to break the taboo of embarrassing illnesses in the same way that Rosie uses her pain to help victims of domestic violence.

And so to see a fellow ‘sharer’ be shamed and silenced by a politician is just abhorrent.

When you go through a terrible experience, whether it be loss, illness or a life event that just knocks you for six, the shock and pain can make you feel so isolated.  It can feel like your life is crumbling and everything has changed forever.  How each person deals with that pain is personal and unique.  Some will keep it private and deal with it quietly and on their own, others may access the support of a wider circle and some may choose to use the experience to make a difference.

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There is no right way and people like Mark Latham don’t have the right to judge, shame and silence.

That judgement isn’t just affecting one person, the ripples spread so much further and you can hurt so many more.  Encouraging a culture of silence affects vulnerable people who need support and cements the shame and embarrassment into a person’s mind. I strongly and passionately believe that we should not fear speaking out about issues that are uncomfortable.

It takes courage to write or speak about things that are not socially acceptable or polite to discuss in public.  No matter how confident I may seem, every time I hit ‘post’, I fear the response I may get.  I worry that it will change the way people see me, I worry people will laugh at me or judge me.  But I keep doing it because I know I am helping, I know I am making a difference.

Rosie Batty is a true hero.  She is doing something amazing and helping so many when I am sure there are times when it is the last thing she wants.  I am sure she would give it all up in a second to have her boy back.  I am sure she is privately grieving and dealing with this in a personal way.  Her public persona and work doesn’t hinder her private grief.  She is amazing.

Please share this post and support Rosie using the hashtag #IStandWithRosie on Twitter.

Sam x

 

 

Pelican Healthcare Live Your Life roadshow – Birmingham

I’m thrilled to let you know that I will be at the Pelican Healthcare Live Your Life roadshow this Saturday in Birmingham.

From 10.00 until 3.00pm at Millichip Suite, West Bromwich Albion Football Club

The Hawthorns, West Bromwich, West Midlands, B71 4LF

I will be doing a talk in the morning and afternoon about self esteem, body confidence and ostomies.

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There will be tons of support and information and other interesting talks through the day.
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Feel free to drop by with your family and friends, anytime between 10am and 3pm. If you have any queries, or would like to confirm your attendance, you can contact us by:

Email – ku.oc1512957343.erac1512957343htlae1512957343hnaci1512957343lep@g1512957343nitek1512957343ram1512957343

Freephone – 0800 318 282

Register now to receive a free goody bag on entry!

I look forward to seeing you there! If you live too far away do check out the Pelican website for details of other roadshows.

Sam

So Bad Ass talk at Seven Hills WI

I did a talk at the marvellous Seven Hills WI in Sheffield last month about self esteem and body confidence.    It was fantastic to get to talk to such wonderful women and it was filmed so please do take a look.  I am a little bit sweary so not suitable for younger viewers.  It is 45 minutes long, so grab a brew and take a listen.

If you would like to book me to talk at your event, get in touch now.

 

 

Love Sam xx

Happy International Women's Day 2015

Hope you have all had a fantastic Women’s Day 2015.  I have had a weekend with friends and family and LOVED seeing my Facebook and Twitter feeds filled with wonderful stories of inspiring women and feminism.

I thought I would share my talk from last year’s International Women’s Day in Barnsley where I spoke about living with my ileostomy and how I overcame the massive changes that surgery brought me and how it affected my self esteem and body image.

 

Much love

 

Sam x