Caring for someone with Inflammatory Bowel Disease (IBD) can be complex and demanding – both physically and emotionally. A carer is anyone who provides help for someone else who is unable to manage without this support. This may be a friend, close relative, or even a neighbour. Most often it is a partner, spouse, parent or guardian.
You may find it difficult to accept that your loved one may no longer be the same person they used to be, or be able to enjoy the same things you used to do together – they may be more irritable or very tired. You may feel that the relationship with your loved one is now purely a carer-patient relationship, based mainly on you looking after them, rather than a balanced one like it was before. All of this is a lot to deal with, especially if this is the first time you have the responsibility of looking after someone.12 Carers are not trained to help people living with IBD, which makes them different from professionals like nurses or care workers.
Recognising your role and responsibilities as a carer is important. It is the first step you need to take to make sure you get the help you might need now or later on. Remember, part of being a carer means taking care of yourself! And try to stay positive – with a bit of planning, staying on treatment and maintaining a healthy lifestyle, many people with IBD will see their symptoms improve, or perhaps even disappear completely.
A person with IBD may experience not only the physical effects of this condition but also the emotional/psychological effects.1 Adolescents and young adults are particularly susceptible to IBD related mental effects. Living with a life-long and often painful condition like UC or CD can trigger fear and worry, and increase your loved one’s levels of stress about all different types of practical issues.3 Overthinking their situation for a long period of time may at times affect your loved one’s mood and make them feel anxious or even depressed.3 Depression is often not just feelings of sadness; it is a complex condition with many symptoms. These can include:4
You can help alleviate your loved one by letting them know that you are there to listen to them whenever they may need you. Honest, open communication about their condition and reassuring them on any insecurities they have may also be helpful.15 You may also want to suggest your loved one speaks to their doctor about how they feel, as they have experience in these matters and can help them find a fitting solution. Your loved one’s doctor can then talk you through what they think will work best for them.
The symptoms of IBD may vary from person to person and over time. It is important that you understand your loved one might need more support at some points rather than others.
Here are a few ways in which you can help:
You may also find it helpful to read through other sections in this website so you are aware of all information they are being given.
My IBD Journey offers guidance on how to plan and manage the range of symptoms you may encounter as an individual living with Inflammatory Bowel Disease (IBD), allowing you to live your life to the fullest.