Your stories matter

Everyone’s voice is important. So, we want to hear from people right across the Crohn’s and Colitis community – not only from people living with the conditions and their loved ones, but also from healthcare professionals, employers, and policymakers.

“People’s lived experiences can be really powerful,” says our Brand and Communications Officer, Mark Thistlewood. “As we move forward with our new strategy, we’ll be championing changes that will make life better for people with Crohn’s and Colitis, so we need as many experiences to draw on as possible. We have lots of statistics and evidence, but it really comes to life when you can say: this is an individual and this is what they’ve been through.”

Stories can be so inspiring. Take Hakeem for example, who recently shared his experience on our blog. His hopes of becoming a mental health nurse were dashed due to issues caused by his undiagnosed Crohn’s but now, with the right treatment and support, he’s been able to achieve his dream.

“Sharing my story helped me to make sense of the last few years on a personal level,” he says, “and I hope that it will help others too. People living with Crohn’s or Colitis who are feeling unsure of chasing their goals may read what I’ve been through and realise that they can still achieve those goals.”

How we’ll use your stories

Personal stories play a valuable role in helping Crohn’s & Colitis UK identify and speak up on the issues that matter most, says Jackie Glatter, Policy Manager. “We use them in our consultation responses, policy briefings, and reports to illustrate why change is needed across a wide range of issues, including health, employment, benefits and access to toilets. 

“At meetings and events with politicians and policymakers, it’s often the person describing in their own words how the condition impacts their daily life that has the greatest impact. Stories improve understanding and inspire action.”

Personal narratives are also used to shape our work with healthcare professionals, adds Rachel Ainley, Research and Quality Improvement Manager. “A key priority for us in 2022 and beyond is earlier diagnosis and we will use these stories to help raise awareness of the symptoms of Crohn's and Colitis with a wide range of community healthcare professionals."

Stories play an important role in sparking change, says Sarah Hollobone, Campaigns Manager. “Your stories are used in our campaigning work to inspire others in the community to come together and take action – they highlight why change is needed and show the profound positive impact change can make.”

Stories also shape the information we provide. Through reading your experiences, we know how important it is to talk about mental wellbeing. That’s why the first event of Awareness Week is a live question and answer session about supporting mental wellbeing. In this session, a panel of healthcare professionals and people living with Crohn's and Colitis will discuss their experiences and answer your questions on this topic. This is taking place on the Crohn’s & Colitis UK Facebook page, at 6pm on 1 December.

Ways to share

Here's a link to a Share Your Story form. There are lots of prompts to help you, a poster you can use on social media, and tips on how to approach your local paper, TV or radio. You could also talk to your work colleagues, fellow students at your school or college or your local politician. Our virtual social events are also another place to share your story.

Of course, not everyone feels comfortable sharing their story publicly. But there are lots of other ways to get involved.

“Even something as simple as sharing our social media posts during the week is a nice way to show that you support the cause without having to say anything personal about yourself,” says Mark Thistlewood. “Or you could decide to open up to family and friends or someone like an employer, who could support you better if they understood more about your condition.”

Look out for an Awareness Week launch email. It will go out on 1 December with a link to all our online resources. And remember to follow us on social media throughout the week.