Should I be honest when you ask me if I’m ok?

For the longest time, when someone asks me how I’m doing, I said “fine thanks!” It’s bright, breezy and if we are honest, what most people want to hear.  

Lots of people I know in the real world read this blog, and so when I see them, I think they feel they have to ask after my health. Being British and having the polite factor drummed into me, I respond with the usual answers of “good, how are you?” “Fine, thank you” and “not too bad!”.  

Sometimes I see the confusion in their faces and realise that they’ve probably just read a heart wrenching description of my mental health and that I shat myself that morning. (Oh the joys of being an oversharing Blogger!) 


It’s a worry when you have a chronic illness that you are going to become too much for those around you, that it must be hard that you are always ailing with something.  I worry that people will get bored of me and my illness, that they wish I’d just be better and stop banging on about it! 

I also feel pressure to be sunny and positive, I think sometimes people expect it of me because of writing this blog. I feel I have to be a shiny, happy person and not talk about all the many negatives. 

It got me thinking about why I say “fine” when I’m anything but fine. And I think some of it is embarrassment, some is habit and some is my issue of opening up to people unless it’s in the written word or if I’m standing in front of an audience! Yes, I realise that’s quite fucked up. 

So I thought I would start trying to be honest when I’m asked how I am. The results have varied! Most people seem taken aback when I say “I’m not great to be honest, I’m back and forth to the hospital and it’s really getting me down” I think it shocks them to get a genuine response to an everyday, casual question. 

When this happens I feel a bit embarrassed and that I’m flaunting some unwritten rule that I should have a stiff upper lip, nod and enquirer how they are doing without actually wanting to know the answer. 

But I’ve also had some great responses, from those who are asking because they care. In that fleeting moment where I tell them that I’m struggling and they reach out, touch my shoulder, tell me that they’re there for me if I need anything. Those interactions feel so real and genuine and human. 

So you’ve been warned. I’m going to try and be honest from now on. If you don’t want to know, don’t ask! 
Sam xx 

Breastfeeding a two year old – is it controversial?

Ahhhhh other people telling women what they should and shouldn’t do with their bodies again. And heaven help us if a mother does what feels right for her and her child. 

Tamara Ecclestone has been defending herself after images of her breastfeeding her two year old child were shared.


Via Tamara Ecclestone Instagram 

The breastfeeding debate is ridiculous, it shouldn’t be a debate at all! Breast milk is the perfect food for babies and infants, it adapts to your child’s needs and it is awesome. 

Some people can’t or don’t want to breastfeed. They give their children formula milk which is the very next best thing. 

Some women feed for a few days, weeks or months, other for years. It’s really no one else’s business. Parents are just doing their best for their kids. 

This photo is beautiful and reminds me of religious art through the ages, the comments are disgusting and ignorant. 

The worst people for this are other women and I truly believe their defensiveness comes from fear. The scariest thing for a parent is to feel others are judging you and think you’re a bad mum. Mums face constant judgement on every aspect of parenting and it’s easy to feel you have to defend your way by attacking others. 

When I couldn’t breastfeed my daughter, seeing adverts telling me breast is best made me feel like they thought I didn’t want the best for my child. I felt the mums breastfeeding were eyeing my bottle of formula and thinking how shit a person I was. It made me so defensive. 

The reality was that those mums didn’t give a shit how I fed my daughter, they just were thinking of their own kids! 

When I breastfed my son for 10 months I felt judged for feeding him publicly, it was ok when he was a newborn but when he was a strapping kid turning his head, laughing and babbling to me, people liked it less. I was asked to feed him in the toilet, sent to bedrooms at parties, tutted at, laughed at and told that once they had teeth you should stop. 

We all need to be a lot kinder to each other, mums have gone through so much. 40 weeks of pregnancy where your body is changed beyond all recognition, birth (i.e. The act of removing a baby human from your body!!!) and then being responsible for another human being, often feeling that you lose your identity along the way. It’s hard work, man!!! 

So it’s easy to see how we get defensive when we feel attacked. We have created the worlds best child (yeah, we all think ours are the best!!!), we are exhausted, stressed, in love, overwhelmed and the most happy and tired we’ve ever been. So when we feel others think we’re doing it wrong, it hurts. And the easiest thing to do is to attack the opposite opinion. 

But it just becomes a vicious circle. From breastfeeding to weaning, stay at home mum to working mum, helicopter to free range… were pitting ourselves against the wrong people here! Mums need to join forces, whatever our parenting style, however we feed, play or work. We’re a vastly untapped powerhouse of humans! 

Being a mum is hard work and we need to look after each other more. We need to celebrate mothers more. We need to stop being arseholes to mums just trying to do their best. 

Sam xx 

Tesco changing signs for accessible toilets and Changing Places

I was thrilled to hear that Tesco are changing the signs on their accessible toilets to recognise that not all disabilities are visible.  As a Community Champion for Crohns and Colitis UK, I spoke out about my thoughts on the change.

There are times when going to the supermarket and doing my weekly shop feels more like climbing Mount Everest. I have Ulcerative Colitis and a permanent ostomy bag, which means sore joints, fatigue and occasionally the need to change my ostomy bag whilst out and about in public. Yet, to look at me, you wouldn’t be able to tell that I had any extra needs.

When I called out the people who tutted, laughed and judged me for using an accessible toilet on my blog, I never expected the enormous response I received from people who had faced the same issues, my story was read 2 million times and shared all over the world!  It was heartbreaking to read how many similar stories people had.  From people with all manner of ‘invisible disabilities’, there were those with dementia, cancer, Tourette’s, people with ostomy bags or other toilet needs whose lives were being made more difficult by the judgment and ignorance of others.

To know that supermarkets are now listening to us, to know they are making a positive change in signage to alert the public that not all disabilities are visible, simply means the world. It means that the next time I am facing my Mount Everest moment, those around me might just have learnt enough to stop judging and know that sometimes there is more than meets the eye.

Thank you Crohns and Colitis for having me on board!

ibd blogger office loo toilet ulcerative colitis

 

Though it is a really positive change for people with invisible disabilities, accessible toilets still have a long way to go to be truly accessible to everyone.  The Changing Places group campaign for accessible loos to all be fitted with proper hoists and large changing benches.

We cannot call toilets accessible when they are still excluding a large number of people.  Imagine having to lay your loved one down on a urine stained, dirty floor to look after their sanitary needs, this is the reality for many families.

So whilst I cheer for the change in signs, I stand shoulder to shoulder with Changing Places and want to live in a world where toilets truly are accessible to all.

 

Sam x

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.

 

ECCO barcelona IBD speakers

 

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.

sam cleasby public speaker disability

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