Dealing with the emotional impact

As well as understanding and getting to grips with the physical condition and treatment process, coping with a rare and complex condition like a primary immunodeficiency (PID) can also bring emotional demands. For example, reaching a good balance between adapting your family life to fit in your child’s treatment, whilst also trying to lead as ‘normal a life as possible’. Your medical and nursing team will have a good understanding of these emotional demands, having had experience of working with other children diagnosed with a PID.

Some level of anxiety or occasionally feeling low or fed up about the condition is normal, but it can become a problem if these feelings interfere with your ability to cope with everyday life.

Similarly, if you feel the distress your child experiences begins to impact on them generally, it is important to seek help. This will usually involve talking through your concerns and jointly developing ways to help manage distressing symptoms of anxiety or low mood. In some situations, you can see a psychologist attached to your treatment unit. However, there are also psychology or counselling services, accessed via your GP, which are usually more local and so may be appropriate in some circumstances.

How to access help

You may be able to refer yourself to psychological services through the Improving Access to Psychological Therapies (IAPT) service. Visit this NHS Choices webpage for a list of services in your region.

The mental health charity Mind may also be able to give support and advice. It specialises in mental and emotional help and is a crucial support to those in need.

Our section ‘Counselling and emotional support’ gives a list of other organisations who may be of help.

This information was written by Dr Penny Titman, Consultant Clinical Psychologist, Great Ormond Street Hospital for Children, London (January 2014).