Increasing awareness around IBD

Cora Herbert challenges taboos surrounding Inflammatory Bowel Disease

Cora Herbert
26th February 2020
Image: Flickr

If we’re lucky, most of us don’t have to think much about our health, bar a yearly cold. Fortunately, lots of work is being done to educate the population on many illnesses, such as campaigns to raise awareness for mental health.

But today I want to talk about a disease which goes under the radar and is not talked about enough, despite having a huge impact on hundreds of thousands of lives across the country. Inflammatory Bowel Disease (IBD), is an incurable, chronic condition which comes in two main forms: Crohn’s disease and Ulcerative Colitis. In the UK, 300,000 people are diagnosed with these conditions, and about a quarter of people diagnosed with IBD are children and young adults. So, what is it like to live with this condition, especially as a young person, and how can we remove the stigma the surrounds this severe and debilitating condition? 

I first learned of IBD four years ago when my dad was diagnosed with Ulcerative Colitis. I had never heard of this illness before and had no idea what it would mean for my dad and his day-to-day life. The symptoms of IBD are varied, but loss of appetite, weight loss, diarrhea, and extreme fatigue are common. One of the hardest parts of living with IBD is its unpredictability - it is a lifelong condition during which time people may experience periods without symptoms (remission), but likewise, flare-ups and more severe symptoms can occur, making it difficult to manage.  

He was diagnosed with Crohn’s disease... this resulted in extreme weight loss, reaching a worrying low of 40kg

One of my friends here at Newcastle spoke to me about his experience of IBD and what it is like to be a young person with a chronic illness. He was diagnosed with Crohn’s disease when he was 16, after he experienced a loss of appetite and an inability to retain food. This resulted in extreme weight loss, reaching a worrying low of 40kg. 

IBD is often seen as a ‘hidden disability’ - that is one which other people would be completely unaware at first sight. Unlike some disabilities IBD does not speak for itself, and so people have to make the decision to open up about their illness and start that conversation. This can be a difficult task at the best of times but especially as the British culture is one of the ‘stiff upper lip’ and keeping quiet about embarrassing or awkward issues. 

IBD often comes with feelings of embarrassment or self-consciousness, and by avoiding conversations about health only furthers these worries

But this attitude is having a negative effect on our discussion (or lack thereof) about health. IBD often comes with feelings of embarrassment or self-consciousness, and by avoiding conversations about health only furthers these worries. Therefore, as a student or young person, it can seem quite a daunting task to discuss health issues, especially ones which are so personal. IBD sufferers have to face challenges on a daily basis, such as judgement for using a disabled toilet as their disability is not immediately obvious. Although a seemingly small issue, worries like these can have a negative impact on mental health and confidence. 

I hope that in opening up discussion around IBD and health we can increase awareness for and understanding of this serious condition. If we continue to treat chronic illnesses as a ‘taboo’ topic, we will only isolate further those affected. The more we talk, the easier it gets.  

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