Communicating about my IBD 

Talking with others about IBD  

When you’re unwell, your studies, work and plans to go out with friends can take a back seat. It can be helpful to have proactive discussions with your teachers, colleagues or friends about your IBD so they can support you when you have a “flare up”. 

This may be an easy conversation if you know them well, but it can be harder if you don’t know them very well. 

When telling others about your IBD, you may wish to direct them to some of our education resources. Some close friends and family might be more curious and able to deal with lots of detailed information in order to support you. Others may only need the basic facts. 

Get an indication of how much you need to say by asking what they already know about IBD. 

What do they need to know and when? 

Sticking to the facts gives you a way to talk about IBD without getting too personal and provides enough information for a basic understanding of the condition. There’s no need to go into too much detail but be open to questions and have some answers handy or direct people to our website.  

‘Need to Know’ basis 

There may be people in your life who don’t need to know about your condition. You can be selective about who you tell and when. Narrowing down the type of support you might need if you have a ‘flare up’ can help you identify the people in your life who need to know. 

Dealing with myths and misconceptions 

Educating people about IBD can help dispel some of the common myths and misconceptions and build understanding about everyday life with IBD. 

Common myths and misconceptions include: 

Myth or misconception	Fact
Certain personalities are prone to IBD	The underlying cause of IBD is biological not emotional. There are no personality traits that mean someone is more likely to the develop of IBD.
A poor diet causes IBD	IBD is not caused, nor can it be cured, by diet, but certain foods may aggravate symptoms.
Stress causes IBD	Stress is not the direct cause of IBD but having IBD can make life stressful, and stress can impact IBD.
Inflammatory bowel disease (IBD) is the same as Irritable bowel syndrome (IBS)	IBD and IBS are different. When someone has IBS their gastrointestinal tract looks normal and it is not inflamed but does not function normally with symptoms that might mimic IBD. When someone has IBD they have inflammation in their intestines which may lead to damage to the intestinal tissue, including ulcers.    IBD patients can also have IBS and are more likely to have IBS symptoms. It is important to work out if there is inflammation present and not treat all symptoms with anti-inflammatory therapy.
Having IBD means you need to have surgery	With safe and effective treatment, the number of people who need surgery has dropped significantly over the past 20 years. According to Crohn’s & Colitis UK, about 15% of people with ulcerative colitis will need surgery 10 years after diagnosis.
IBD is curable	Currently, there is no cure for IBD. But early diagnosis and the use of appropriate therapies means an increasing number of patients can have control of disease inflammation and be in prolonged clinical remission.

How to talk to friends and family 

When you live with a chronic health condition like IBD, you may want to hide what you’re going through from others. The risk in doing this is you can become isolated and feel alone. That’s why it’s important to be open with the people that love and care about you, such as your close friends and family, so that you have a good support network if things get tough.  

How to talk openly about IBD 

• Choose the right time and place – consider a private room where you can speak freely and have the other person’s undivided attention. 

• Give them the facts – talk about your IBD and how it impacts your life. We offer some information that might help guide your conversation. 

• You may need to state the obvious – you may need to explain what happens when you’re experiencing a ‘flare up’ or the types of things that can cause a ‘flare up’. You may also need to be direct and state in simple terms what kind of support you need. 
   
• Be honest – everyone deals with illness in different ways. Telling the other person that you need their support can help strengthen your relationship and grow your support network. 

• Be open to questions and try not to be put off by unexpected reactions – people are naturally curious and will have questions. It’s also worth considering that some people can have negative reactions to serious news despite their best intentions. 

• Pace yourself and give the other person time to process – you might decide to have several small conversations rather than covering all the information in one go. It might also take time for the other person to fully absorb what you’re telling them. Make a plan to check in with them again at a later date. 

Dating and IBD 

It’s one thing to talk to your friends and family about IBD but talking about it on a first date is something else!  

You probably don’t need to disclose your IBD on a first date but you might want to plan your date so you know where the toilets are located or what food will be on the menu. Knowing when to tell someone you’re seeing about your IBD will depend on how your relationship is progressing and when you feel comfortable sharing more information. 

When you’re ready you might start by talking about the symptoms of IBD as they relate to you, for example, occasional pain and tiredness, and that at times you might not be up for going out. You don’t have to go into too much detail in the beginning. 

Some people find it easier to open a conversation by text or instant message rather than face-to-face. It’s up to you what works best for you. 

As you get to know each other you might feel more comfortable offering more detail, like when you’re attending your next appointment. As you get to know them better, you might feel more comfortable asking them for support when you need it. 

School and IBD 

We have developed a book for teachers of students with IBD with specific information for all levels of schooling. The book covers general information about IBD including physical symptoms and treatment, what IBD means for kids and young people, information about diet, toilet access and a guide for how the school and the family can work together. 

Tips for talking to classmates about IBD 

• Give friends the facts  
• Ask for help when you need it 
• Allow friends to ask questions 
• Try not to be put off by inappropriate comments or questions. If hurtful things are said let your teacher, parents or guardians know. 

Work and IBD 

If talking to your employer about your IBD is on your to do list, it can be hard to know where to start.  

Here are some tips to help guide discussions with your employer: 

• Request a meeting. Lock in some time to speak to your manager privately. In the meeting request you might like to provide some context about why you’ve asked to meet. For example, ‘I would like to discuss possible workplace adjustments that would help me perform my work more effectively’. 

• Keep it high level. Have the facts handy to share with your manager. You can send them a link to the guide for employers on the Crohn’s & Colitis Australia website after you’re meeting. 

• Have some ideas ready. If you’re meeting to discuss workplace adjustments, it’s a good idea to have some ideas written down. These may include easy access to adequate toilet facilities, cover for urgent toilet breaks, flexible working arrangements, understanding of specific treatment requirements, what makes an IBD-friendly workplace, or allowances for travel and social support. 

Our guide for employees is a useful place to start. You can give your employer our link to guide for employers.

How to talk to your colleagues about IBD 

We spend a lot of time working alongside colleagues and they may be the first to notice when we’re having a ‘flare up’. Talking to your colleagues about your IBD can help you find practical solutions for when you’re unwell. What you say and who you tell will depend on your relationship with them and how much they need to know to support you.  

Here are some tips to help guide discussions with your colleagues: 

1. Grab a coffee with a colleague together or move to a quiet and private meeting room. 
2. Give them the facts how they relate to your condition. 
3. Ask for support and be specific about how they can help for example ask your colleague to take notes for you if you can’t attend or need to leave a meeting. 
4. Be clear about your boundaries. For example, you might ask them to keep your conversation private. 
5.  Keep the channels of communication open and let your colleague know they can ask you questions whenever they like. 
6. Regroup later and direct them to the Crohn’s and Colitis Australia if they would like more information.