Written by Emily Fox.
Featured Image: Josh Rees.
Josh Rees was only 10-years old when he was diagnosed with Crohn’s disease. Following Crohn’s and Colitis Awareness Week 2020 he tells our Deputy Editor, Emily Fox, the devastating reality of living with an invisible illness before and during the COVID-19 pandemic.
Crohn’s sufferer, 22-year-old student, Josh Rees, decided to take a leave of absence from his course in Fine Art at De Montfort University, due to the impact COVID-19 continues to have on his physical and mental health. He is one of roughly 30,000 people in the UK who currently lives with Crohn’s disease.
Crohn’s disease is a bowel condition where parts of the digestive system become inflamed, because the immune system attacks itself. It can cause severe pain, extreme fatigue and constant trips to the toilet, as well as other symptoms. According to Crohn’s and Colitis UK, someone is diagnosed with the condition every 30 minutes.
“I think people see Crohn’s as just something that affects your digestive system, like okay, he’s just got a bad stomach or whatever, he’ll be fine.”
“People just sort of, acknowledge it. But they sort of shrug it off as well because they don’t fully understand it.”
He says people often struggle to comprehend just how debilitating Crohn’s can be, as they do not see the impact it has on his day-to-day life. Josh adds how they can seem insensitive at times and tend to think they have it worse off.
Josh was just a child, when Crohn’s took over his life for the foreseeable future. He recalls:
“It started when I was about 10 years old. I remember we were on holiday, and I was developing symptoms. I was getting stomach pains and I was throwing up things. Lots of foods just started to not agree with me. And I was unwell for a really long period of time. They put me on a liquid diet, for several weeks, and that sort of helped for a bit.”
He was soon referred for further colonoscopies: that was the point where he was diagnosed with Crohn’s disease.
The severity of Josh’s condition has meant he has had multiple surgeries and he remembers when he first had a stoma bag fitted.
“It took weeks for me to leave the house. I was so afraid to leave the hospitals feeling worried about access to the toilets and if the bag would leak. It was quite a stressful experience.”
The hardest thing for Josh at first, he admits, was struggling to adapt to these new circumstances.
“You have to watch almost everything that you eat, because if something you’ve eaten makes you feel unwell, then you’ve got to try and narrow things down to find out what caused that. So it doesn’t happen again.”
Excruciating pain and discomfort are not the only symptoms Josh experiences. The constant fatigue and arthritic joint pain, he says, is not normally something people register. He also struggles with hypoglycemia, where he has episodes of rapid drops in sugar levels. This can lead him to pass out or collapse in extreme circumstances.
“Yes, it primarily affects my eating and my digestive system as well. But it’s like, my body is essentially fighting itself and that’s why it’s causing me to have all these other side effects.”
He added: “[Crohn’s] affects your whole body and it affects more or less everything you do.”
Being diagnosed with Crohn’s massively knocked Josh’s confidence and meant social situations proved challenging.
“One of the things I never wanted to do was go on holiday after the surgery. And it took me until the first year of uni to go on holiday with DMUGlobal for my first ever holiday since.”
“I’ve always struggled with mixed anxiety and depression, and I feel that’s because of the very first experience I had when I took leave from school. But even now, I had issues with people over lockdown, because they were being quite negative towards me about I don’t even know why.”
When Josh moved to university in 2018, he was worried about how condition might affect his ability to make new friends and how he would have to explain his condition once again.
But he came to realise: “If I just tell people I have Crohns, I don’t really have to explain it to them. You know, if they want to know more, then it’s up to them, whether they want to ask me about it, because I feel perfectly fine talking about it.”
Unfortunately, during the first and second lockdown when he reached out to others, he says they tended to turn their backs on him.
“It was as if there was no one really, to sit down and actually have a conversation with when everyone else is sort of getting on with their lives.”
He said they didn’t understand what shielding actually felt like. One person said he was lying about his health, his response was “Really? I’ve got a bag attached to my stomach.”
During the pandemic, Josh’s attitude shifted. He says: “You’ve just got to be selfish, you’ve got to think about yourself and look after yourself. You’ve got to put yourself before anyone else.”
In relation to his course, the transition from practical-based learning to online learning was extremely difficult, and ultimately, was the experience which led Josh to defer his final year of university until September 2021.
He found the end of his second year extremely tough as he was unable to apply what he had learnt in previous years of university. His course in Fine Art was less transferable to online means, than other courses and Josh said:
“Writing about that piece of work isn’t the same as actually producing it because it’s whether you’re able to execute those techniques and skills that you’ve learned across the way, it doesn’t translate into paper.”
“You have people on our course who struggle with written assessments. Universities haven’t really looked at how people with disabilities are going to adapt to those circumstances. I’d say even myself, to some degree, I was a bit lost with the lack of support.”
Before the pandemic, Josh chose to surround himself with positive people who had similar interests and also enjoyed his company. In his second year at university, he became involved with student society, DMU Acapella. He says getting involved in a society initially helped him to make friends, cope with his illness, and it gave him a sense of being.
Throughout lockdown, he has decided to reignite his love of singing and virtually joined the Manchester University Barbershop and a UK-wide group called Fusion. This has enabled him to feel part of a community once again and build new relationships during his year out from university.
For more information about Crohn’s disease, please visit Crohn’s and Colitis UK.