Inflammatory Bowel Disease and why I don’t want society to return to ‘normal’ after the lockdown restrictions have been lifted…
I first encountered the symptoms typically attributed with Inflammatory Bowel Disease (IBD) when I was age 9, many years of tests ensued and eventually I was diagnosed with Ulcerative Colitis, age 16.
Very little was known about IBD back then, I was told to research it in the school library. My first search brought up “Serious bowel condition, typically leads to death”. Wow! That description held no punches! It was the first, but certainly not the last, traumatising experience I encountered on my IBD journey.
Whilst no-one had really heard of it back then, it certainly seems much more common knowledge now which is great, but much more needs to be done in terms of acceptance of IBD amongst education and employment.
Debilitating, humiliating, traumatising and agonising – they’re all the words I’d use to describe the symptoms of Inflammatory Bowel Disease.
Symptoms may also change over time, with periods of good health when you have few or no symptoms (remission) alternating with times when your symptoms are more active (relapses or ‘flare-ups’).” (Crohns & Colitis UK)
My symptoms have typically included:
- Abdominal pain and cramps
- Visiting the toilet more than 20 hours an hour
- Fatigue and extreme exhaustion
- Joint pain, swelling, and mobility issues
- Blood pressure issues (leading to a stroke)
- Eye inflammation
- Feeling generally unwell, often with a temperature/fever
- Weight loss and weight gain – fluctuating frequently
- Mouth ulcers and sore throat
- Skin problems
- Nausea and dizziness
- Constant fear of developing Bowel Cancer
- Mental Health problems
- Complex Trauma
Sounds a real delight, doesn’t it?!!!
It should be noted that symptoms in children can be similar, but more difficult to spot. Often the main thing doctors look for is a failure to thrive. Each person’s presentation is different and full medical investigation should be undertaken.
My School Years and Trauma
I had a fabulously supportive Head of 6th Form, Ian Seddon, who made all the reasonable adjustments possible to support me through my A Levels studies. I was hospitalised for much of my 6th form years, and studied from my hospital bed where I was placed on a ward with bowel cancer sufferers nearing the end of their life; traumatising event number two!
The support at school started and stopped with Mr Seddon, however. I recently found my old education report which was littered with comments such as “if you attended more lessons we could teach you more”.
Comments like this made me feel so inadequate and humiliated. The symptoms and illness were shame inducing anyway, without this added pressure and embarrassment. Despite continuing with my studies, I dropped two subjects and increasingly disengaged from others. What was the point?
I suspected I would fail my A Levels and so deferred my University place, and chose a job in retail that was not suited to my ill-health whatsoever.
Fortunately, my efforts paid off and I passed my A Levels despite the comments about lack of engagement!
We see this so often now, when teachers give up then what hope do students have?
Work Years and Trauma
After working in retail for a short time, I embarked on a career in recruitment and headhunting. During that time I did not find an understanding employer.
Each employer trivialised my condition, and despite having a recognised disability no reasonable adjustments were made. I still got the promotions though, but the pressure was immense with my final employer saying “I don’t think you’re cut out to work, given you are a mother and so unwell all the time”. WOW. Trauma!
It is no surprise that after a decade of mistreatment and lack of respect from educators and employers it took its toll on my mental health.
I wanted to work, I have an incredible work ethic and a real desire to make change in the world. So, I decided to work for myself!
Making my Own Success
In 2008 I took the decision to set up my own business and I’ve not looked back… Skip forward to 2021 and I run a very busy, very successful national organisation – Sunshine Support!
But how does my health look now? Terrible!
Along the way I have picked up other conditions that are associated with my IBD (Arthritis, Chronic Fatigue, Chronic Kidney Disease, Fibromyalgia, skin problems… The list is endless, but certainly doesn’t define me!) . In 2011 my diagnosis was updated to Crohn’s Colitis and to date I have tried most meds on offer including chemotherapy.
Lockdown has been a DELIGHT!
This year to celebrate World IBD Day, Crohns and Colitis UK have launched their #NoGoingBack campaign, and I love it!
Being in lockdown has been fantastic for people like me who are not in remission, and struggle with leaving the house… There are so many elements that have made my life better:
- Everyone is accepting online meetings – no demands for meeting up!
- Everyone is accepting of online events – no demands for being in a room full of people!
- Less travel
- Not using public toilets, and always being in the comfort of your own home
- Not worrying about fasting in order to leave the house
- Less guilt because of all of the above has been brilliant!
Lockdown has shown us all how many reasonable adjustments can be made for children and adults with IBD, so I am joining the #NoGoingBack to campaign for these improvements to remain for those who live with IBD.
In the Words of Crohns and Colitis UK
This World IBD Day, let’s tell the world there’s No Going Back!
EVERYONE’S BEEN LONGING FOR THINGS TO GO ‘BACK TO NORMAL’.
But when you live with an invisible condition like Crohn’s or Colitis, that means going back to a world that can make life harder for you – dealing with people who don’t understand your condition, in a society not set up to help you. Nobody should have to accept that kind of ‘normal’.
So, this World IBD Day, let’s not go back to normal. Let’s go forward to something better. Join us in walking to raise awareness and funds for people with Crohn’s and Colitis, calling for more workplace support and campaigning for better IBD care across the UK.
Together, we can create a world where everyone living with Crohn’s and Colitis feels understood and supported to live their best life.
Click here to visit the Crohns and Colitis UK website and get involved to take action. Help us improve acceptance, awareness and accessibility within education and employment throughout the UK.
Imagine, if we could improve awareness, acceptance and accessibility we would improve overall health and reduce the trauma and mental health damage that we encounter and struggle with for life.
It’s got to be worth a shot, right?!
EDUCATORS and EMPLOYERS – SOME ADVICE…
Think about the reasonable adjustments you’ve been forced to make over the past year in lockdown.
Can you continue with some of these for those in your care/employment with Inflammatory Bowel Disease (or other conditions)? Remember your duty of care… And remember how cost effective and EASY remote education/working has been over the past year!
Incredibly focused and extraordinarily passionate about justice, Chrissa is our founder.
Chrissa has extensive experience in business management and has a special interest in psychology. Combining the two, it comes as no surprise that Chrissa loves working with people, and has developed two of her own people-focused businesses very successfully to date.
Chrissa founded Sunshine Support in 2017 after her own SEND battle left her feeling beyond uneasy about the injustice for SEND families.
Chrissa has 4 daughters who keep her feeling alive every day and an incredibly empowering husband, Tom. As a family they can often be found deep in discussion about equity, kindness and how to make a difference.
When not working, Chrissa can be found singing (with her own little Wadlow choir, of course), indulging in all important self-care and studying her MA in Autism and SEN at the University of South Wales (where she originates from!).