Help-seeking for IBD fatigue

What is it about?

Why did we do this research? Fatigue is one of the most difficult parts of IBD to live with, but many people do not ask their doctor or nurse for help to deal with it. How did we research this? In this research, we spoke to 12 people who all had experienced IBD fatigue, to find out some of the reasons why some people ask for help to manage IBD fatigue and others do not. We spoke to people who had sought help in the past and people who had not. To make sure we covered a wide range of different viewpoints, these 12 people, who were all members of the ISCC included men and women of different ages, with different levels of fatigue and had different backgrounds. What we found out There are many different reasons people choose not to seek help for IBD-fatigue: For people who did not seek help: • Some people do not talk about IBD fatigue because they believe nothing can be done to help them • Fatigue is not viewed as an important or ‘real’ symptom of IBD • Some people found it hard to know when they were feeling fatigue or if it was due to IBD or other reasons such as work, ‘over doing it’, or just getting older • Some people felt that when they did talk about fatigue to their doctor or nurse that it was dismissed or just was not spoken about again. • Some people do not want or need help to manage fatigue • Some did not know or were not told about IBD fatigue • Some do not know who to ask for help For people who did seek help: It was usually when IBD fatigue prevented people from living their normal lives that they decided that they needed help. Most people had good relationships with the doctors or nurses who looked after their IBD had frequent contact with them. What you need to be aware of when reading the results of this research The views and experiences of these 12 people may not represent the views of everyone with IBD fatigue. It does give us, other researchers, healthcare staff and people with IBD fatigue more of an awareness into some of the reasons people do or do not seek help for IBD fatigue. It also gives us some appreciation of the experiences of people who do seek help.

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Photo by Adrian Swancar on Unsplash

Photo by Adrian Swancar on Unsplash

Why is it important?

What does this mean? For some people, IBD fatigue is a very difficult symptom to live with. It is also a difficult symptom to treat. For some people, this means they do not ask for help. For others, they have stopped asking for help because they feel like it is pointless. This leaves some people feeling disappointed and frustrated, especially if they feel like they are being dismissed. Others continue to ask for help even though it is not always successful. Healthcare staff should tell people with IBD who they can talk to about their fatigue. Treating IBD fatigue is not always straightforward. We need more research into different treatments and ways to manage and live with fatigue, but at present there is a lot of research into new and existing ways to manage fatigue. It is important that people with IBD fatigue do seek help and explore different treatments that may be helpful for them. It is important to let people know if you need help. This help may be to reduce fatigue or to learn other ways to cope with it.

Perspectives