Advice for friends and family

The impact of IBD is not just limited to the person diagnosed, but also affects those close to them. If someone close to you has been diagnosed, you no doubt are aware of the feelings of concern or anxiety that can come with this. You might be wondering what this means for their future or prospects for recovery. Although IBD can be a frightening thing to observe in someone you care about, be sure to remember that you, as a friend, partner or family member, can make a big difference in their life.

It can be very difficult to understand what it is like living with IBD but gaining an understanding of the condition and its impact can foster a sense of care and understanding for the person. Doctors and your local Crohn’s and colitis organisation are excellent sources of information. Some common questions you might have include

• What caused this?
• Can it be cured?
• What makes it better/worse?
• How can I help?
• What treatments are available?
• How long will they be sick for?

It is often difficult to ascertain when someone will achieve remission and get relief for their symptoms or even how this will be accomplished. The treatment of IBD is not straightforward and relies on a tailored approach that considers the unique characteristics of the person and their IBD. As such, it is generally inappropriate to compare one case of IBD with another (e.g., someone else you know, or have heard about) –the treatment that works for one person may fail for another, and their experience of symptoms can differ significantly.

Even basic gestures such as accompanying the person to their doctor, hospital visits can be a source of significant support for the person. Asking them about their illness or symptoms should be approached carefully, as reminders of illness and discomfort can exacerbate a situation the person may already perceive as being out of their control.

Remember that you, too, can experience a significant emotional burden watching someone you care about deal with IBD. People often focus on caring for their loved one at the expense of their own feelings, potentially leading to mental health issues (e.g., depression, loss-of-energy, anxiety). It is essential that you keep track of your own mental well-being. Consider talking to someone you trust for support or guidance (e.g., friend/family member, counsellor, psychologist), or contacting your local Crohn’s and Colitis organisation for information and other resources.

Communication advice

• The emotional burden of IBD can be significant and people can alternate between wanting to talk about their IBD and not. Let them take the lead to avoid unnecessarily bringing their attention to their illness at times they might not want to think about it
• Sitting with someone when they’re unwelland not talking can foster a sense of care and support when they otherwise might not have the energy to talk.
• Be careful when offering any advice. On top of the instructions they get from their doctor, people with IBD are often given advice regarding treatments and therapies (e.g., diet). Although it is usually well intentioned, it can be frustrating to hear “such and such cured their IBD with X”
• Avoiding heavy conversation topics during times when the person is unwell –light or humorous conversation can improve their spirits when things seem chaotic or uncertain.