Telling friends and family

It can be difficult to talk about your inflammatory bowel disease (IBD) to other people, even to your partner, family and friends. You may feel embarrassed talking about the issues you are facing with your ulcerative colitis or Crohn’s disease and you may feel isolated. But finding people to talk to can really help you to feel more positive about your condition and also help sometimes to find practical solutions to the problems you are having.

Who should I tell?

You may not want to tell everyone you know about your condition. It may be good to choose one or two key people amongst your family or friends to discuss your diagnosis with.

If you are a young person, your parents and immediate family will need to know, while if you are older and have a partner, this is probably the most important person to share your diagnosis with. If they come with you to see your IBD specialist visit, it’s sometimes helpful to check that you all heard the same messages.

You may later want to share the information about your diagnosis with a wider group of friends, family, colleagues and teachers. It really depends on how much disclosure you are comfortable with and what your relationship with that person is. Remember you may give different levels of information to different people.

Although it can be difficult to talk about some aspects of your condition, informing people close to you about your diagnosis will help them to understand what you’re going through and what to expect. They will then be able to be more supportive, especially during a flare-up.

What should I tell them?

When you are telling someone about your IBD, it’s important that they understand what the condition is and how it might affect you both emotionally and practically (depending on who you are speaking to). Remember it is up to you how much detail you want to tell them about your condition. It might be helpful to have some information at hand so they can understand what you are experiencing and what issues you might be facing.

You may want to discuss:

• Your condition (what it is) whether it’s ulcerative colitis or Crohn’s disease
• What your worries are concerning your IBD
• Details of your symptoms and how these affect your day-to-day life
• What support you require from others in order to successfully manage your IBD

It may be helpful to explain what aspects of the condition you may find difficult and challenging.

These might include:

• What happens to you during a flare-up
• Any embarrassment associated with your symptoms
• The need to find toilet facilities urgently at times
• Why sometimes you may not want to go out in public – this may make some aspects of your social life more challenging, but if friends and family are able to support you and help you with planning, it will be easier to manage
• Possible side effects of any medication you are on, so they can understand how this may impact on your life

When telling others about your illness, it may be helpful to give them information or a list of resources where they can turn for answers to their questions. Some people may be curious and can deal with lots of detailed information in order to support you. For others, just some simple facts and practical points might be better

What should I ask them to do?

You may need to make suggestions to your friends and family in terms of what type of help you might need.

This might include:

• Understanding that occasionally you won’t be yourself and won’t feel well enough to do some things
• Flexibility about the choice of activities – sometimes you might need to stay in rather than go out
• Keeping the bathroom free, or making it free at short notice
• Making sure there is space in the fridge for medications, etc.
• Encouragement and support to maintain a healthy lifestyle and to keep taking your medication even when you feel well

If you are a young person, or have someone who cares for you when you aren’t feeling well, encourage them to read the information for parents and carers. Find more information for parents or carers taking care of people with IBD.