Living with JIA

Living with arthritis can be challenging not only for the child or young person with JIA, but for their families and friends.

Overall, your child should be encouraged to keep their life as normal as possible – to just do the things that kids do. This helps to increase their self-esteem and also their feelings of control over their illness.

School and sporting activities, partying and playing aren’t too much fun when mobility is compromised and painful flare-ups take so much enjoyment away. Depending on the type and severity of JIA, pain and discomfort experienced as well as the joints affected can change not only on a daily basis, but from one hour to the next.

And the pain of juvenile arthritis is not only physical. JIA can impact on friendships, self esteem and confidence. The sense of adventure, motivation to try new things, feelings of belonging as well as academic achievement, artistic expression, and athletic prowess can be undermined. Puberty can be delayed by some medications, and stiff joints and altered growth patterns can affect self image.

Support is vital; as is understanding.

With accurate early diagnosis and ongoing treatment, going to school, playing sport, being with friends, learning a musical instrument, and holidaying with the family should still be part of normal life for children with JIA.

Sleep and rest

Children with JIA can struggle with tiredness and fatigue.  It is important therefore, that your child gets sufficient rest. This includes a good night’s sleep and possibly a rest during the day, particularly if they are young, are having a ‘flare’ of their JIA, or have previously had a poor night’s sleep.

See Good sleep habits  for tips to give your child the best chance of a good refreshing sleep.

Healthy eating

Children and teenagers need a healthy, balanced diet for normal growth and development. See healthy eating.

There is no evidence to suggest that any food or diet will cause or cure arthritis, or cause disease flares in JIA. Exclusion of certain foods or food groups however, may mean your child misses out on important nutrients, vitamins and minerals.

It is vitally important that your child maintains a normal body weight. Carrying extra body weight puts additional stress through weight bearing joints.

A dietitian may be able to assist if your child is having issues associated with diet and nutrition.

Play

For children, play is a vital part of physical, cognitive and social development. Play takes them away from their day-to-day for a while and provides and opportunity to be an astronaut or superhero even if for just a while!

If a child with JIA is in pain, having a flare of symptoms, or has physical limitations, you may need to invite a few children into their play circle rather than expect them to join the neighbourhood rough and tumble.

If you are concerned about your child’s emotional health or feel that they need assistance with ‘just being a kid’ ask your child’s treating team for advice about seeing a play therapist or child psychologist.

Managing appointments and consultations

Attending appointments, consultations and therapy sessions takes time, energy and effort, but they are a very important part of the JIA management plan.

Try to remove the angst as much as possible by being prepared, organised and focused. And have a ritual of doing something a little special after the appointment/session – some time with your child that is not focusing on their JIA.

See Finding out your child has arthritis for practical tips to help you get organised.

School

Your child’s school plays an important part in their development, providing educational and social skills and opportunities, so it makes sense to partner with your child’s school and teachers.

Most teachers will not have had a child with JIA in their class so it is important to inform the school/teachers about the condition, how it affects your child and any specific needs that they may have. With this knowledge, teachers can assist in recognising issues and work with you and your child in trouble-shooting solutions.

Juvenile arthritis: A teacher’s guide can help your child’s teacher to understand JIA and provides tips and guidelines for pre-school, primary and high school teachers.

Actively communicating with your child’s teachers can assist in ensuring that the child’s individual needs are catered for.

Helping your child to cope

Overall, your child should be encouraged to keep their life as normal as possible – to just do the things that kids do. This helps to increase their self-esteem and also their feelings of control over their illness.

• Aim for your child to return to school or pre-school as soon as possible.
• Encourage and support your child to continue hobbies such as sport, music and other activities or to develop new ones.  Talk to your child’s physiotherapist or occupational therapist about suitable sports and activities.
• Ensure your child share in chores at home, within their capabilities.
• As early as possible involve your child in their treatment, to encourage independence and a sense of control.
• Seek help from a psychologist or counsellor if they are struggling with their feelings, relationships, confidence or moods.

Teenagers and arthritis

Being a teenager can be challenging enough without adding a chronic condition to the mix. Teenagers with JIA will need support and guidance to develop the skills to help them have the confidence to deal with the challenges of living with their condition while ‘setting their sails’ for adult life.

As a parent, this includes supporting their increasing involvement in their own care planning, goal setting and decision-making, ensuring that they understand their condition and any implications associated with the decisions they make about their arthritis, its treatment and management.

The key message for parents of teenagers with arthritis to reinforce is that your child is not defined by their JIA but by who they are and what they can do and be.

As your teenager transitions into young adulthood, they will need information to support the next stages of their journey. See Living with arthritis – a guide for young adults which provides a practical guide to treatments, services and lifestyle choices.

Caring for the whole family

A child being diagnosed with arthritis was never part of a family’s plans. The condition affects not only the child with arthritis, but also parents, siblings and extended family members.

Shifting roles, new routines and responsibilities and added financial and emotional stress can all take a toll. Family bonds may be tested, and siblings of children with more severe JIA may feel resentful and guilty. Try to give each child in the family some regular one-on-one time and to constantly reinforce that they are loved.

Most importantly, parents of children with JIA need to take care of themselves too. Develop an informal support network of family, friends and neighbours who can lend a helping hand or be there for a chat or to give a hug. And make sure to make time for the things you enjoy, spend time with your partner and/or friends and find ways to deal with stress.

JIA is a chronic condition and will require long-term management – in other words, it is a marathon rather than a sprint, so remember to look after yourself too.

For more information on these topics see Finding out your child has arthritis.

CONTACT YOUR LOCAL ARTHRITIS OFFICE FOR MORE INFORMATION AND SUPPORT SERVICES.