A new conversation guide on talking to people with inflammatory bowel disease (IBD) about their condition aims to banish thoughtless remarks and ill-informed commentary to the past.
Published by Crohn’s and Colitis Ireland to mark World IBD Day on Monday May 19, Gut to Know aims to help people be understanding, better informed, and ultimately more empathetic when speaking to someone who has IBD.
The webinar also featured a keynote contribution from consultant gastroenterologist,Prof Anthony O’Connor, based at Tallaght University Hospital, who provided an introduction to IBD, including symptoms, diagnosis, treatment, coping strategies, and supports available.
The free webinar was supported by Pharmacosmos, can be made at www.crohnscolitis.ie.
For Dr O’Raghallaigh, like the person diagnosed with IBD, family members and friends are also embarking on a journey of health discovery of their own, with learnings for all involved.“I often talk about the myth that some of us have that we can control our bodies. Not only does the myth shatter for people when pure bad luck leads to a diagnosis of a chronic disease, but they also need to find a way to communicate about their health with their loved ones, who may still want to believe that control is possible. That’s a hard line to walk. The person diagnosed has to change the way that they are living which, by extension, means that the lives of those around them also change.
“Unless they’ve had a similar experience with IBD, and even sometimes if they have, our loved ones are learning alongside us on how to talk about health, symptoms, treatments and fears. Most of the time, they feel compassion but don’t know exactly how to express it. They worry that they are interfering, or being nosey, or that they might say the wrong thing. When we have a chronic condition like IBD, we don’t want to burden our loved ones or lose our autonomy. At the same time, we might need help sometimes. Using good communication strategies such as those outlined in the Gut to Know conversation guide can help smooth over some of the rough patches in negotiating tricky conversations. Ultimately, it will enable family and friends to better offer support in managing the symptoms experienced.”
For Armagh senior footballer and All-Ireland champion, Niall Grimley (31), being diagnosed with colitis in May 2021 was hard to accept, but he is now much more positive about the future:“Back in 2020, I was in a lot of pain and discomfort before being diagnosed the following year. While I have since been hospitalised twice, thankfully, now, my symptoms are under control. I take fortnightly injections of a biologic medicine which allows me to live
It is estimated that there are approximately 50,000 people in Ireland living with IBD. Most common symptoms are urgent and frequent bowel motions sometimes with blood, diarrhoea, nausea, vomiting, reduced appetite, weight loss, stomach cramps, and painful joints and skin rashes.
Anyone concerned about IBD can call the Crohn’s and Colitis Ireland Support Line on 01 531 2983 (Mon/Wed/Fri, 9.30am to 12.30pm) or visit www.crohnscolitis.ie.
To access a copy of the Gut to Know conversation guide on supporting a loved one or patient with IBD, visit: https://bit.ly/444c3nt.
| Six Tips for Talking to People with IBD about IBD 1. Privacy please. Ask the person with IBD if it’s OK to ask questions about their condition. Some may be happy to talk. Others may not. Listening and offering your undivided attention helps the person to feel supported. Ask open-ended questions such as “how are you feeling today?” 2. Offer empathy not pity. Acknowledge the person’s feelings and circumstances but avoid expressing pity. “I’m here for you” or “is there anything I can do?” are so much more helpful than “I feel so sorry for you”. Acknowledging unseen symptoms such as fatigue, joint pain and mental stress with the words “I believe you” can provide great comfort and relief. 3. Think before you speak. Avoid blaming the person or trivialising what they are going through. Saying “you’re stressing too much” or “everyone gets stomach aches” or “I heard about a miracle cure” do nothing to improve their situation. 4. Getting down to business. If you’re an employer, are there ways in which you can adjust workloads, or provide for flexible hours, breaks or remote working, that would help your colleague? Think about the work environment and how accessible the toilet facilities are. Let your colleague know that it’s safe to discuss their needs without fear of judgement—“I want to sit down with you to find solutions that work for everyone”. 5. School of life. If you’re a teacher, allow the student to leave the class without having to ask for permission. For example, you could say “If you need to leave class, just go, we’ll catch you up later”. Think about how school deadlines can be adapted in the event of absence due to a flare-up. If going on a school trip, consider how the student can travel in comfort and enjoy the activity. Collaborate with the school counsellor to ensure emotional support is available as required. 6. A shoulder to lean on. If you’re a family member or friend, do include the person with IBD on invites to nights out and outings, but if the person is unwell and the answer is “no”, respect that. For example, you could ask “Would you like to stay in or do something low-key if you’re not up to going out?” Offer practical help with chores, errands and travel to medical appointments. On more manageable days, celebrate “small wins” and enjoy the moment. |
