Psychological and emotional wellbeing is an important part of living with IBD. It is important to discuss your feelings about the illness with your care team. It can also help to think about what support you need from friends and family, or through organisations such as Crohn’s and Colitis UK.
If your diagnosis was more than a few months ago and you are particularly struggling with difficult feelings about your illness (such as anxiety and depression) you can talk to your Consultant or IBD Nurse about being referred for psychological work. The Gastro Psychologists can offer talking therapies and coping strategies to people who are struggling with the illness.
The emotional impact of a diagnosis of Inflammatory Bowel Disease
People can experience a wide range of emotions when they get diagnosed with Inflammatory Bowel Disease (IBD).
For some the diagnosis may come as a terrible shock, with lots of new information to take in. Others may feel some relief that there is an explanation for the symptoms they have been experiencing.
Some common emotional reactions are:
- Shock / disbelief – “I can’t believe I have this illness”
- Numbness – “I cannot / will not think about this now”
- Fear – “what does the future hold?”
- Anxiety – “I can’t cope with this”
- Anger – “who is to blame for this?”
- Sadness – “what has been lost, or what will be?”
- Resignation or Acceptance – “I will have to get on with it”
Remember that there is no right way to feel in the early stages. Being diagnosed with a chronic illness can change the way we feel about ourselves and the future, so it is very normal to experience a lot of strong emotions. Generally this should settle down in the following weeks and months.
Taking in new information
With IBD there can be a lot of new information to take in. Your medical team will talk you through the details of your illness. This might include different treatments and medications, lifestyle changes, or things to expect in the future.
It can be difficult to process information when emotions are running high. Some people find it helpful to have a friend or relative with them at appointments to help them understand and remember the details. Taking away written information can also be helpful. Some people like to do a lot of their own research on the internet or support groups, while others already know about IBD through their past experiences.
Everyone is different when it comes to taking in new information. You might only want to know as much as necessary at first so as not to feel overwhelmed. Or you might want to know as much as possible in order to feel more in control. It is important to talk to your medical team about how you are feeling in the early stages so that they can understand how to best support you in understanding and managing your illness.
Commonly asked questions about emotions and IBD
Q. Can stress or negative emotions cause IBD?
A: There is no evidence that stress or negative emotions can cause IBD to develop. It is not known exactly why some people get IBD, but it is thought to be a combination of genetic, environmental and biological factors.
Q. Does IBD cause any emotional problems?
A: Living with IBD can be challenging, and people often find it difficult to talk about as we generally tend not to talk about our bowels in conversation. The impact of the symptoms on everyday life can cause a range of feelings such as frustration, sadness and anxiety
Q. Do emotions play any role in the symptoms?
A: There is some evidence that stress and negative emotions can make symptoms worse in people with IBD. Again it is not known exactly how this happens, but all emotions can affect the way the body is working and we generally tend to feel more unwell when stressed or upset.
Q. Does that mean I need to avoid getting upset?
A: We all experience negative emotions, and it is not possible to avoid them. Sadness, stress, frustration and anxiety are all normal human and research shows that trying to avoid these feelings can actually cause more unhappiness in the long term.
Remember that emotions are not the primary cause of IBD. However it can help to maintain a sense of psychological wellbeing as part of management of IBD, and it can be useful to seek help if you are experiencing strong negative emotions very frequently.
Coping with IBD in the longer term
Over time most people find that they emotionally adjust to a diagnosis of IBD. This can mean different things to different people, however it usually requires finding ways to live with IBD without it getting in the way of the things that are most important in life. This might include making changes to lifestyle or diet, or getting into a routine with treatment and medication. We know it is helpful for people to feel a sense of control over their IBD and its management.
It is also important that people feel supported by others. This might be primarily from family and friends. However it is also important to be open and honest with your Consultant and IBD Nurses. If you are really struggling with your emotions they can refer you to the Gastro Psychology service.
It can also be helpful to have contact with other people living with IBD, which can be helped by attending a Newly Diagnosed event at the hospital or through organisations such as Crohn’s and Colitis UK.
Dr Phil Simpson
Senior Clinical Psychologist