Experiences of children with arthritis

Introduction

Playing is an essential activity for physical, emotional and social development and when very young children develop arthritis they may show less enthusiasm to explore and play. This means that ordinary activities need to be adapted, or new games used so that all the children can play together, and so that parents and children can enjoy shared time. This section brings together information to help the reader understand the child’s experience, and provides ideas about activities to try.

In those early years, parents may find it difficult to put into words why they feel something is wrong especially if the child is a firstborn. For the clinician too, making an accurate diagnosis is especially difficult at this age. The children may just seem more reluctant to learn to walk, or they become less vocal (except for crying) and less curious about or responsive to new toys, people and places.

If only...

It is not uncommon for parents years later, to realise that within their child’s behaviour there were clues that something was wrong and parents may feel guilty that they had not sought help sooner. The fact that parents eventually secured a correct diagnosis and appropriate treatment is a real achievement in itself. Wishing to change the past is understandable but unproductive; instead, parents can wisely focus their emotions, time and efforts into the challenges of life today.

Children who develop arthritis at a very early age seem to tolerate their circumstances. These children perhaps do not remember a time when they were well, and so perhaps absorb the consequences of arthritis stoically. In contrast, adults who develop arthritis in later life can vividly compare their former healthy life with their new situation, and can describe the experience of arthritis symptoms fully. Young children are too immature developmentally to accurately verbalise how they feel, which is in part why researchers have shown that children report lower levels of pain than their adult counterparts (see chapter Five).

Playing and learning

Playing and exploring are important because they are a vital part of: -

1. learning about the world, and practicing things like using your hands, and recognising things. This is especially significant if your child is too ill to enjoy going out to the park or other outdoor occasions when their minds would be stimulated by new things.
2. distracting your child from feelings of illness, or apathy. Even the very tired child can join in.
3. having fun, sharing laughter and learning. They help restore some balance between the serious, unpleasant and necessary hospital/clinical/therapy things you have to do with the child because of the arthritis. Finding ways to enjoy doing things together will help build up your relationship with your child, which you will need when faced with difficult aspects of living with arthritis.