Even with a completely healthy family it’s never easy to balance your life: keeping the relationship with your partner alive, as well as providing love, stimulation and security for your children.
These are natural human reactions not restricted to childhood. Your child might pass through various stages of grieving including denial, anger, bargaining, depression and acceptance. Psychologist Elizabeth Kübler-Ross defined these stages of grief, which apply not only to losing a loved one, but also to any major shock, such as discovering that you have a disease.
(You’ll find more useful information in the book Life Lessons: Two Experts on Death and Dying Teach Us about the Mysteries of Life and Living by David Kessler and Elisabeth Kübler-Ross Touchstone Books).
You’re likely to go through the same stages of grieving as your child, although they’ll obviously manifest differently. Venting your anger on the members of your family won’t help the process at all. Recognise that your partner might also feel guilty about passing on a defective gene to your child. Acknowledge that these emotions are common to all those who are in your position and accept that you didn’t “cause” the illness.
Self-pity is a luxury reserved for people with no dependents or loved ones. Your task is to monitor the pulse of the family: watch for resentment between the child that has JA and those that don’t.
At the other end of the scale, the child or children not affected by juvenile arthritis might feel a need to overcompensate and be overprotective toward the sibling with JA. Watch for signs that the “well” child is neglecting his or her own needs and normal activities to care for the “ill” one.
As far as possible, encourage your children to sort out their disputes among themselves and to discuss their feelings.
Make it clear that you expect your child with JA to behave as well as the other children and that the illness isn’t a licence for abrogating his or her responsibilities. Children with JA might be unable to mow the lawn, but they can do other chores such as tidying up or folding laundry.
This may seem draconian, but it actually helps to keep the peace in the home, because you’ll avoid resentment and guilt among the children.
Encourage the child with JA – and the others, if they show an interest – to learn about the disease and its treatment programme. As he or she grows older they can be encouraged to assume responsibility for taking medication on time, following an exercise programme and being aware of side-effects. In this way you’ll have the child make the transition to self-reliance in adulthood.
It’s a fine balance between showering your child with love and care, and encouraging them to be self-sufficient. The child may try – perhaps subconsciously – to manipulate you into allowing “off-limits” activities or to be relieved of household chores.
Being consistent will help smooth the way over these incidents. Make it clear that the child comes first when he or she is ill, but that the family has to function as a unit and that each member has an obligation to ensure that this happens.
When your child first becomes ill, you may set aside relationships with other family members. It is important, however, to continue to talk and spend time with others. Plan special time to spend alone with your spouse, or with the entire family.
Make allowances for the child’s “off-days” when he or she is too ill or stiff to take part in an activity. This can be an emotional minefield if the family has planned a visit to the zoo and the child with JA feels unwell. The family will have to make adjustments to these uncertainties and make contingency plans accordingly. In some cases simply waiting a few hours will be enough.
The first step is to teach the family to accept that these uncertainties are part of life. Encourage ideas on activities for active days and quiet days. You could consider having a child minder or relative look after the child with JA, or to postpone the excursion until another day. Either decision might lead to floods of tears about being “left out,” so play it by ear.
By the age of three, a child with JA might begin to realise that he or she is “different” and this will inevitably affect his or her self-image and view of the world. Not being able to play as vigorously as other children might still leave ways to play with other children.
Children can be cruel, so you’ll have to make some effort to reinforce a positive self-image by finding ways in which the child with JA can be helpful. Continually include your child as a valued and needed member of the family.
When delegating chores you can allocate the child with JA ones that can be done easily, such as feeding pets, folding laundry, tidying up and so on. Give credit for all achievements, without fawning over the child.
A sibling who offers to help might mean well, but leaving the child with JA to accomplish something independently will reinforce his or her sense of self-worth.
It might be difficult to not intervene when the child struggles, but if there’s any chance of him or her succeeding at a task, offer encouragement, but not help.
The sense of accomplishment will outweigh the struggles. During these times don’t put too much emphasis on the child’s minor aches and pains, although the obvious discomfort and pain can’t be ignored.
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