Living with a chronic illness is difficult for anyone. When a child is diagnosed with a chronic health condition, the daily challenges that now face the child, parent and family can be overwhelming. Here are some ideas to help you offer support and receive support when you need it.
What are chronic illnesses?
A chronic illness can be classified as any long-lasting health condition that lasts over three months, affects a person’s normal activities, and requires frequent hospital visits or extensive medical care.
Supporting the ill child
Process emotions: It is very common for children with chronic illnesses to feel enormous amounts of stress as they try to balance dealing with a health condition and coping with schoolwork, social events and other aspects of everyday life. Instead of trying to offer a solution, encourage the child to recognise the emotions they have, accept them as a natural part of what they’re going through, and express them in a way that feels comfortable for them.
Knowledge is power: Remember being scared of the dark? Remember how a simple torchlight quickly dispelled those fears? Knowledge is a bit like that. The more the child learns (appropriate to their age level) about their illness, the more they will feel in control and less frightened they’ll be of the unknown. Therefore, discuss with them what their illness is all about, and what will happen to them in hospital. Reality is often far less scary than a child’s imagination.
Be present: As adults we naturally want to fix things. Often what children need – especially those children living with a chronic illness – is to be seen and heard. This is why they will seek out someone who is willing to listen to them – whether they are depressed, angry, frustrated or happy. Instead of offering a solution, know when to be present and just listen to the child express their emotions.
Support their friendships: Illness disrupts a child’s life, interfering with their routines and social activities. A devastating consequence is often the weakening or loss of key friendships, which offer the child invaluable support. Be sure to make an extra effort to help them maintain those connections and help your child to find new ways to make and maintain new relationships. You will probably also need to help the child to cope with teasing from peers.
Supporting the siblings
Find ways to involve siblings: When a child is seriously ill, the family’s focus naturally shifts. The result is that the parents spend a great deal of time away from home or focusing on the illness, which means that brothers and sisters often feel forgotten. Give them simple, age-appropriate tasks that contribute to the day-to-day functioning of the household, so they know they are needed. At times when siblings cannot visit the hospital, ask them to draw pictures or make cards to put in the sick child’s room.
Coping with jealousy: Feeling excluded often leads to jealousy. Some siblings may even wish that the sick sibling would die, only to feel guilty or responsible when the sibling’s condition does not improve or even worsens. Make it clear that they are not in any way responsible for their sibling’s illness. Also, counteract these feelings by reassuring them that these emotions are normal and by making sure they always feel loved and included.
Answer questions: Children can see and hear what is going on around them. Instead of letting them come to their own conclusions, take time to listen to their questions and provide answers that are truthful, concrete and age-appropriate.
Supporting the supporter (you!)
Process your emotions: Instead of bottling up all that frustration and emotions, find a way to let it out through meditation, exercise or even a diary that allows you to process your emotions.
Get support: Chronic illnesses can be isolating for everyone involved. As the adult, you are offering so much support while often neglecting your own needs. You should turn to a confidant or a health professional – someone you can just vent or talk to about your thoughts and feelings. Start by talking with other parents who have children with special healthcare needs. You can also seek out online support through the many internet forums, blogs and online support groups that have been created to help people cope by allowing people to share their knowledge and experiences.
Take care of your needs: It’s hard not to put your whole life on hold when a child gets ill. Make sure you make time (even 30 minutes) to do something you enjoy. Take breaks, spend time with your partner and try to keep your daily routine as normal as possible.
This article contains opinions and facts and references to other information sources. You should always consult a registered healthcare professional for any personal advice.