share your story

Telling your story can be really helpful for others, and give useful insights to everyone about what living with inflammatory bowel disease (IBD) is really like for children and young people, and their families.

You can choose if you want to be identified with your story, but if you would like to tell your story anonymously, it can still be useful because it is your experience as a real person affected by IBD. If you would like to remain anonymous, email your story to stories@cicra.org and just state you wish it to be anonymous.

If you are happy to be identified, you can tell your story by writing to us, or you can tell it to camera as a video. Make sure to include your name and current age. We’ve suggested some questions below to help you think about what you may wish to include, but what is most important is that you tell the story you want to tell, and that you write about the things that matter most to you. Your story is yours and we will get great insights from whatever you tell, and anything unusual, memorable or important to you is always helpful.

If you video yourself telling your story (on a smartphone is fine, a camera even better), we can edit it for different things we might use it for. It’s best if you are well lit and the microphone works so we can hear you clearly. Once completed, fill in and email us the Photo and Video Consent Form to stories@cicra.org. If you have chosen to film yourself, as video files can be too large for email servers, we suggest you may want to use one of these sites:

https://wetransfer.com

https://transfer.pcloud.com

Always keep your copy until we confirm we have received your file and it works.

If you are a child or young person with IBD, you may wish to tell us about:

  • When you were diagnosed and what happened leading up to that point, when did you notice something was wrong? How did you feel when you were told your diagnosis?
  • How has your life changed as a result of IBD before or after diagnosis?
  • What has your experience been of medical care?
  • How do you feel about having IBD?
  • Talk about your friendships and family relationships since having IBD.
  • What things about IBD make life difficult and in what way is it difficult?
  • Talk about positive things that have happened, or people you have met.
  • What things have been really helpful for you?
  • If you were to go back in time, what advice would you give yourself before you were diagnosed?
  • Anything you would really want people to know about what it’s like to be a young person with IBD?

If you are a parent or relative or friend of a child or young person with IBD:

  • Talk about what happened before diagnosis, when did you first think something was wrong?
  • How did you feel once it was diagnosed, and how did you feel when you were told about IBD?
  • What has your experience been of medical care?
  • How do you feel about IBD and what impact has it had on your family or friendship?
  • What things have been really helpful for you?
  • Talk about positive things that have happened, or people you have met, linked to IBD.
  • What advice would you give yourself before any of this happened, what would it have helped you to know?
  • Anything you would really want people to know about what it is like to have a child affected by IBD?

volunteer to sit on a BBC or ITV sofa

could you speak to the news media?

You can really help people understand how IBD affects children and young people. Personal stories, whether from a parent or a young person, are often the most popular pages on our website, and we would like to hear from parents and children who would be prepared to talk about their experiences to journalists. We are preparing some possible media opportunities this autumn, including Global’s Make Some Noise and launching our new guides for primary and secondary schools. We are keen to hear from parents and children who can explain what life is like with Crohn's, colitis and IBD.

Personal stories in the press and media can be a powerful way to show the impact of IBD on childhood. It isn’t easy to talk about our health, even when it is just between friends, but we also know that when others hear from a person in a similar situation, it can be very reassuring and helpful. We will support you every step of the way, and give you the skills and confidence to deal with an interview on live radio or tv and others will be inspired by you as we are.

Let us know you are interested in becoming a CICRA media volunteer by emailing nick@cicra.org