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Isolation, anger and guilt: coping with childhood illness

Naturally, parents want to protect their children and keep them safe, so it can be particularly devastating to learn that your child has a serious health condition, such as diabetes, cancer or a heart condition.

Although feelings of isolation, low self-esteem and confidence are typically reported in the cases of the sick child, parents are also at risk.

Over The Wall (OTW) was founded in 1999 as part of Paul Newman’s international SeriousFun camps to provide free, life-changing, therapeutic activity camps for children, young people and families affected by serious illnesses. The camps take place around the UK during school holidays and encourage children to challenge themselves, build confidence, and develop their social skills. Because school trips often can’t cater for health conditions, staying at camp is the only time children spend with their peers away from home, aside from hospital stays, and this can provide parents the respite they desperately need.

Reflecting on her and her son’s experience of camp, one parent recently commented:

“[Camp was] a great way for us to get some respite as well as for my son to feel independence and freedom from us always there checking everything for him.  Knowing that all the kids at camp experience the same daily challenges of restriction and constraints means a lot”.

Parents can feel a complex mix of guilt, anger and sheer exhaustion when managing a child’s illness – it can drain the family both emotionally and financially, with long stays at the hospital away from the everyday ‘norm’.

Lucy Miller, Head of Nursing and Camper Experience at OTW says: “The main struggle parents with an ill child face is being stretched in so many different directions – they have to balance health care with work commitments, relationships, healthy siblings and then of course looking after yourself becomes less of a priority. Parents don’t get enough time to spend on themselves and this can result in burn-out”.

There are steps that parents can take to safeguard their mental health, and that of their sick child. Many health care charities have helplines, support groups or can provide a listening ear, such as the charities OTW are partnering with this year: Crohn’s & Colitis UK, Anthony Nolan and Allergy UK. Communication is key – parents will already be in touch with health professionals who are a good source of information and advice.

Lucy continues: “It’s also important to get some ‘me’ time and one of the great things about our camps is that parents can do just that”.

At OTW’s Health Challenge and Siblings camps, the children attend either a week-long or a two-day residential camp without their parents, meaning a proper period of respite for parents – but also a chance for the child to develop their own sense of independence where they’ll learn to trust and work with others. Parents often use this time to take other siblings or family members away for a short break, or merely spend quality time together – which would normally be impossible when caring for a child with serious illness.

At OTW’s Family Camps – where the whole family can attend for free – a dedicated team of staff and volunteers take responsibility for the children at key points during the camp, leaving parents to either relax or take the opportunity to speak to other parents in the same situation.

“It’s so important for both the child and the parent to learn that actually, they can be separated, and they can learn to gain some independence from the other. One of the main bits of feedback we get is about children growing in confidence, self-esteem and independence when away from their parents and amongst their peers at camp.” Says Lucy.

Recent parent feedback also reflects this:

“Allowing our children to be able to experience a residential break is so fundamental to their development and quest for independence”. 

Camp helps instil independence in children – “it’s amazing to see the difference in a child from the first day when they arrive and may be reluctant to leave their parents’ side to the end of the week where they’ve achieved so much more than they thought they would or could” says Lucy.

To fight feelings of isolation as a parent, helping children to keep contact with their friends, encourage them to go to school when they can and to get involved in social activities will allow the parent to renew enjoyment in some of their own activities that were enjoyed post-diagnosis.

OTW camps give parents the chance to recharge their batteries and, in the words of the most recent Ofsted report, “thrive and not just survive”.

As one parent said: “I cannot tell you what Over The Wall means to our family… sounds a cliché, but I think your camps really can change lives”.

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