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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 their child's 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).[3]

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.

Playing and learning at home

Even though your young child feels unwell or in pain, you can do many things to help them learn and enjoy playing. Include other young siblings wherever possible so that the children learn to play in each other's company. Here are a few ideas: -

In warm water

• Being in warm water soothes painful joints so give your child as many play times in the bath as they enjoy. When they are more comfortable physically, children naturally begin to enjoy exploring, testing and playing with things.
• Use a long non-slip mat in the bath for added safety (easily purchased from many high street shops). You can get sitting support seats to use in the bath but you cannot leave your child unattended.
• Use plastic household objects for bath time play - like sieves, ladles, wooden spoons, different sizes or shapes of plastic boxes, plastic icing sets.
• Seek out bath time toys from catalogues or markets. Give one at a time to the child to play with, keeping the others out of sight. When your child begins to get bored, change toys. Relatives will readily join in the search for new bath time toys.
• Play nursery rhyme tapes and do the actions with her, it is amazing how differently they join in when they don't hurt.
• You can get rubberised foam letters to stick on the bath or tiles so she can play with letters and short words. You can also buy soap crayons for her to scribble with in the bath.
• Why not get on with your ironing or letter writing in the bathroom at the same time!
• Take this playtime outdoors in summer, possibly using washing up bowls but you may need to top up the warm water. Remember to keep children out of direct sun, use hats and sun creams.

Swimming

• Swimming and playing in warm water has many benefits for children with arthritis. They are also good opportunities for the whole family to play together.
• If you use public swimming pools, try to ensure that the child does not get cold.Take a towelling bathrobe or dressing gown for the child to wear as soon as you get out of the pool. The child stays warm then while you get your dry cloths to change into.
• Some good local hotels may have smaller, warmer pools that you could ask to use. Talk to the manager, people are generally willing to help once they understand why their facilities would help your child.
• An extra adult is the best thing to take swimming (!), especially useful when you get out and need to change the ill child into dry cloths promptly.

Summary of key points

• If you know the child really enjoys an activity, let them do it for short periods, but give them a prescribed dose of pain relief beforehand.
• Children love playing with finger or glove puppets - which exercise their hands without them noticing.
• Being in one position for any length of time will generally make them stiff and uncomfortable. Therefore when taking journeys of more than fortyfive minutes give them a dose of pain relief (following the directions on the bottle).
• Most children enjoy playing with artwork - get different bits of cloth, different kinds of paper (tissue paper, thick card, shiny papers, kitchen foil, baking paper etc). Cover the table or floor in newspaper, enjoy making pictures of things with your child using paper glue and all these different textures and colours. Try using different background, for example pieces of old wallpapers and enjoy experimenting.

Activities like this may not be your idea of fun, but relax and have a go. Your child will really benefit from and enjoy exploring new things - you may even get to enjoy it!

Issues about choosing a school, explaining the child's condition to school staff, and securing support for the different needs of your child in school is described in full in chapter Eight

Living with difference and pain

The two strongest experiences described by children with arthritis is their feeling of being different from their friends, even when they appear to look 'normal'. In primary school, children become aware that families are different, and that each child is unique. Initially their natural sense of uniqueness and growing self-awareness is in step with their peers. The crunch comes when children begin to change their sense of uniqueness for a realisation of their difference. Children realise that arthritis makes them feel different, at a time when they desperately want to be the same as everyone else. For some children this sense of being different can become the primary consequence of arthritis.

On the opposite page you can see how some children described what their arthritis felt like:

Another girl wrote:

Depression and problems with friends

Many children with arthritis experience feelings of depression, low self-esteem and poor self-image, and tiredness. Adults who also cope with chronic pain share some of these feelings. These feelings may arise from young people's sensitivity about being unable to do things like their friends, and these feelings are accentuated during adolescence, and are discussed in the following chapter. The situation can seem bleak for a young person with arthritis, and the future uncertain. Sometimes the strength of a child's depression is underestimated by parents, and assumed to be premature moodiness from normal adolescence. Support from other family members and open communication about thoughts and feelings are powerful tools to combat shared feelings of depression. It is essential that you create space and time to relax together and do fun things. Difficulties with friendships is common as the child feels disadvantaged by their physical limitations and the varied demands of treatment. Children in most cultures pick on weaker members of the group and your child may endure hostile name-calling, unkindness and varying forms of bullying.

Supporting children with arthritis

There are no easy solutions to real challenges they face but these things can help:-

• Reassure your children that you love them, that you are on their side and you will tackle the problems together.
• Help your child develop confidence, always encourage their efforts
• Say how proud you are of them.
• Encourage their self-esteem, involve them in things they enjoy and can do.
• Avoid situations that will highlight what they have difficulty doing, for example on sports day suggest they hold the tape, or keep the record of winners rather than race with their peers.
• Talk about positive ways of being friendly to other children.
• Talk to school staff or friends parents as soon as problems arise -both for advice and practical assistance to stop problem behaviours.
• Keep calm.
• Talk about the situation with the whole family, face the problem together.
• Siblings offer valuable insights, advice and solutions.