14-15 - TL Galapagos: Talking heads

When most people sit down with a friend or family member for a cup of tea, they chat about what is going on in their lives – a promotion at work, their recent break-up or an upcoming holiday.

But what if something was impacting you, and you didn’t feel comfortable talking about it? Something that you might even worry you shouldn’t bring up, or are too embarrassed to mention, even though it’s really important to you?

Earlier this year, Galapagos Biotech hosted a focus group of patient representatives to better understand the challenges facing people living with inflammatory bowel disease (IBD) and discuss how they could be supported by patient groups and the pharmaceutical industry.

Insights highlighted that being able to speak openly about their condition and connect with others living with similar, relatable experiences is crucial for helping to manage IBD and its impacts.

Unfortunately for people living with IBD, their symptoms can often be seen as ‘taboo’, with stigma around the condition making it difficult to talk about. But it doesn’t stop there, aside from the physical symptoms, people living with IBD are twice as likely to experience mental well-being problems than the general population.i

Many people find it daunting to discuss their own mental well-being, which only adds another layer of difficulty when trying to communicate about their condition and how it affects them.

To provide a space for people living with IBD to feel comfortable in sharing their experiences and feelings, Rachel Swayer, founder of the online community ‘The Bottom Line IBD’, with support from Galapagos, is launching ‘The IBD Café’.

The Bottom Line IBD is a UK patient advocacy resource for people with IBD, providing support and education to the community. Rachel had a vision to create a forum where people can speak openly about their IBD and Galapagos, for who patient support is always a priority, is pleased to be able to contribute to the initiative.

Each IBD Café will focus on specific challenges faced by the community, offering expert advice from guest speakers, as well as providing an open forum for discussion.

IBD includes Ulcerative Colitis (UC) and Crohn’s Disease (CD), both of which impact your bowel by causing painful sores and inflammation.ii

Symptoms of IBD vary between people, depending on the severity of the condition and which part of the bowel is affected, but can include: cramping pains, frequent and urgent diarrhoea, sometimes with blood and mucus, extreme tiredness and weight loss. ii

Approximately 500,000 people live with IBD in the UK and, whilst both UC and CD can start at any age, they usually present before 30-years-old. ii IBD is a lifelong condition, meaning that many people live with IBD for decades and must learn how to manage it throughout different stages of their life.ii

The nature and symptoms of IBD can have a far-reaching impact on a person’s life – from work and socialising to body image and intimacy.iii

This disruption to life’s usual activities, and the lack of awareness and stigma around IBD, can contribute to psychological distress and feelings of isolation, low self-esteem, anxiety and depression.iii

In addition to the intricate association between these social and emotional factors, the relationship between IBD and mental well-being may be even more complex. Studies suggest that the gut and brain are connected through bidirectional pathways, and that changes in the gut are communicated to the brain, affecting mood and anxiety.iv

It is therefore important to consider the pathophysiology of people with IBD since there is emerging evidence that stress or other negative psychological attributes can impact the disease course.iv

It is widely acknowledged that talking about psychological well-being can help people process and manage their feelings, which is exactly what the IBD Café aims to achieve.v

The IBD Café, launching in October and scheduled to run for three months, aims to provide an encouraging and supportive space for people to chat about their life with IBD.

Each session of The IBD Café will focus on a different topic that is fundamental to helping people live well with the condition. The IBD Café is just one of several activities focusing on living well driven by Galapagos, aiming to support the wider IBD community.

In the first of its kind community conversation, the sessions will feature healthcare professional speakers to share an overview of the relationships that diet, intimacy and mental well-being can have on IBD and how this links to overall holistic health.
The Café will include time for sharing stories as well as Q&A amongst the attendees (people living with IBD) and speakers.

“The IBD Café sessions will bring tremendous value to the Crohn’s and Colitis community. By creating a supportive space for people with IBD, some of whom may be living with the disease in silence, we are hopeful that many will find confidence in a place amongst their peers,” explained Rachel Sawyer, Founder of The Bottom Line IBD. “We know that topics like diet and intimacy are so important for holistic health and have an intrinsic relationship to mental well-being.”

“Our wish is that attendees walk away from these sessions inspired, empowered and assured that they are not alone and that they can live well with IBD,” she added.

The nature of IBD and its symptoms can be embarrassing for people to discuss – to truly support the patient community, we must continue efforts to break down existing stigma amongst the general population by spreading awareness about IBD.

In the meantime, it is critical that people living with IBD have a comfortable space to share their experiences – a process that helps individuals manage their own condition while also reassuring others in similar positions.

The IBD Café will provide a space where there is no such thing as ‘oversharing’ or ‘too much information’, inspiring confidence amongst the community to share their experiences and ask for help, if needed.

Conversations that arise in spaces like The IBD Café are just the beginning and as they grow and spread, awareness and openness about IBD amongst friends, family, employers and the general public will improve.

Galapagos are committed to supporting people living with inflammatory conditions and, by working closely with The Bottom Line IBD and listening to patient insights, we hope to provide genuine support to the community.

By encouraging people to chat about their IBD over a cup of tea, we hope to help break down stigma and give a voice to those living with the condition so that everyone can live well with IBD.

i Crohn’s and Colitis UK. Info & Support. Mental health and wellbeing. Available at : https://crohnsandcolitis.org.uk/info-support/information-about-crohns-and-colitis/all-information-about-crohns-and-colitis/living-with-crohns-or-colitis/mental-health-and-wellbeing. Accessed: July 2023.
ii Crohn’s and Colitis UK. Info & Support. All about Crohn’s and Colitis. Available at : https://crohnsandcolitis.org.uk/media/y42le4ua/all_about_ed_7c_2021_web.pdf. Accessed: July 2023.
iii Knowles, S. R., et al. Quality of Life in Inflammatory Bowel Disease: A Systematic Review and Meta-analyses—Part I, Inflammatory Bowel Diseases, Volume 24, Issue 4, April 2018, Pages 742–751
iv Bonaz, B., Gastroenterology: Brain-Gut Interactions in Inflammatory Bowel Disease, Volume 144, Issue 1, January 2013, Pages 36-49
v Lieberman, M.D., et al. Putting feelings into words: affect labeling disrupts amygdala activity in response to affective stimuli. Psychol Sci. 2007 May;18(5):421-8.

Talking heads

Problem shared is a problem halved

What is IBD?

The IBD Café

No such thing as ‘oversharing’