Psychological wellbeing is a crucial part of living well with IBD. There is a lot of research to say that it is not simply an add on, but a vital part of understanding and treating IBD. In fact this kind of understanding is part of a biopsychosocial model of illness. A biopsychosocial approach looks at the psychological and social influences of IBD alongside the biological part.  Psychological aspects include thoughts, feelings, early life experiences, personality and coping skills for example. Social aspects include culture, economic and family systems and education background. Psychological and social factors are considered in combination with the biological aspects of IBD such as inflammation and genetics, to influence how it is to live with this condition, how it is treated and what remission actually means.  

We know that people living with IBD can experience anxiety and low mood more so than people who don’t have IBD. We also know that these can affect disease activity. Equally, disease activity can be stressful and lead to low mood. This is the biopsychosocial understanding of IBD in practice. It is not all bad news however, as extensive research has been done to find out what kinds of strategies and supports can help people live well with IBD and lessen their risk of developing more severe issues with mental health down the line.  All of which influence disease activity.  These are explored below. 

Acceptance: 

Acceptance can be considered both a skill to practice and a process. Acceptance does not mean giving up or liking that you have IBD.  One way to consider acceptance in IBD is see it as a psychological adjustment, both to the original diagnosis and the changing demands of the condition over time. Studies have shown that quality of life and disability from IBD are directly related to the person’s acceptance of the condition as well as resilience.  

Adjustment can involve practical tasks, like gathering information and building knowledge about IBD. Knowledge about IBD as a condition, and IBD as it is for you, can then help you make informed decisions about treatment options, how to manage flare ups and potential risks for you. This knowledge will come from your lived experience of your own body, alongside your medical team, as well as hearing others’ experiences with IBD and your own research. Time and experience living with IBD can also provide this knowledge so it is important to look at acceptance as an evolving process.  

Adjustment may also involve emotional tasks such as giving permission to grieve the loss of the life you had imagined without IBD. It might involve talking to loved ones about the impact and the potential losses as part of the diagnosis. It could involve counselling around this adjustment.   

Essentially these emotional tasks mean opening up to emotional experiences, without trying to change them or judge them. This doesn’t mean putting up with misery, or abusive or unhealthy situations or people. It means allowing the whole emotional experience of being human; the good, the bad, the messy, the unmentionable. There is a wealth of research that says when it comes to emotions, what we resist, persists. Although it sounds counter intuitive, opening up to painful emotions means you are less likely to suffer from them. It is how you do this that matters. Self-compassion and mindfulness are key in helping this, and outlined below. 

Self-compassion: 

This is often described as giving the same kindness and also accountability to ourselves that we would give to a good friend. A recent study showed self-compassion was linked to improved wellbeing for people living with IBD.  

We know too that self-compassion can help put the brakes on the flight or fight system – the body’s alarm system. This system can often be out of balance in IBD because of inflammation (amongst other reasons), so self-compassion is a promising area for exploration in IBD. 

Many people living with IBD that I meet, describe being quite hard on themselves. For instance, in a flare blaming yourself for what you ate or how you managed stressful situations.  Being compassionate with yourself isn’t about letting yourself off the hook or doing whatever you want, it’s about treating yourself with balance and understanding.  

Self-compassion can practised in how you speak to yourself when things go wrong, both the tone of internal voice you talk to yourself in as well as what you say. Self-compassion can also be practised in actions, like for instance not pushing yourself to achieve or perform at your usual level during fatigue. As well as more formal self-compassion meditative practices.     

Mindfulness: 

This is simply the act of paying attention to what is happening for us and the world around us, right now, without judgement. Mindfulness has been shown to be effective in disorders of gut brain interaction (of which IBD is one), potentially through influencing visceral sensitivity (when messages between the gut and brain are louder, more frequent and intrude on awareness more than they should).  

In a wider sense, cultivating mindfulness can help us recognise the often well-worn paths we travel down both in relation to ourselves and how we relate to others. The idea is that in becoming aware, we can first allow space for acceptance of what we cannot change, and instead chose how to relate to challenge.  

Several hospitals offer group mindfulness programmes and it is worth asking your team about this.   

Social Support: 

You don’t need to be a psychologist to know that having loving, caring relationships in which you feel supported are an important part of life. Social support has been explored in IBD and unsurprisingly, has been linked to improved quality of life, with a positive impact on psychological wellbeing. It also helps build resilience. Again, the detail is important here, in that support can be emotional, practical or informational for instance. It is unlikely that one person will provide all of this so it can be helpful to consider what you need when, and who might offer it, from the available relationships in your life. 

If you are noticing that life feels very stressful and you don’t feel able to cope, or often feel very down in yourself, start by sharing this with someone you can trust. If these feelings persist after several weeks, do consider reaching out to your IBD team to see if you can be linked in with hospital psychology services, or contact your GP, or the ISCC. You don’t need to suffer alone.  Help is out there. 

by Dr. Susan Brannick, Clinical Senior Psychologist.