Any illness that lasts a long time is bound to have a psychological impact, not only on the patients themselves but also on their family and friends, etc.
Firstly, if a baby has the disease, the mother worries, she wonders if it’s her fault, she asks around and nothing she hears makes her feel any better, everyone has a different opinion. The more the mother worries, the more the baby senses it: babies are sponges when it comes to soaking up their parents’ feelings.
Either way, whether the baby is treated and gets better, or isn’t treated and doesn’t get better, there are psychological repercussions.
When a child is well, it’s thanks to a demanding daily treatment programme.
Chasing around after their child every day to follow the treatment programme is exhausting for parents – in some cases they even have to fight with their children, who’ve simply had enough. Asking them every day how they are and if they’ve been scratching is fatal – this kind of conversation does nothing positive for a child. Children need to talk about their day, their friends, what they did at school, their lives in general, but they don’t need to talk about is their eczema. Parents may disagree about treatment methods and that brings another layer of difficulty to family life. Fear of seeing the patches come back again, frequently combined with underlying feelings of guilt, sets limits on a child’s life, particularly where sport is concerned. Atopic children do less sport than other children, because the sweat is unbearable.
In addition to being judged by the rest of the family and comments like: “It’s nothing” and “It’s all in the mind”, there is the problem of the onset of modesty. Modesty naturally arises at an age that varies with the individual; it helps the process of symbolic separation from the parents. There comes an age when the door has to remain shut and a child’s body must no longer be seen by the rest of the family. But as treatment has to take place every day, if children don’t learn how to do it themselves, parents go on applying the products and therefore seeing and touching their children’s skin. When the onset of modesty is disrupted by the need to treat the skin, it adds another layer of difficulty to a child’s ability to separate from its parents and contributes to a feeling of shame that is hard to express.
Children who suffer from eczema patches on a daily basis are often more nervous than other children and do not sleep very well.
These sleep disorders are the reason why some children experience delayed growth, as the growth hormone is produced at night, so if sleep is of poor quality then less growth hormone is produced. While eczema is already hell on earth in terms of the intense itching, what is even worse is the impact of the judgement of others. When a child first comes face to face with other children at school, they soon realise, from the glances and comments that they get, that they have been rejected. Some children even start to believe that no-one will ever be able to love them because of the appearance of their skin.
The child’s self-esteem, therefore, is already under attack at primary school…and then it just gets worse...
What can be done?
There are two key words: trust and empowerment
Trust is about the child being treated by a patient-focused team that listens to both the child and their parents. Once the parents trust the team, they can stop feeling guilty, apply the products without feeling stressed about either the eczema or the treatment, and just be parents like anyone else, regardless of the eczema. When a child’s parents feel confident, the child no longer feels responsible for their parents’ anxiety. It will be far easier to gain the parents’ trust and confidence if they have access to a coherent medical argument and are able to express their worries. All of this is possible when the disease is managed at one of the 12 centres currently offering therapeutic education in France.
Empowerment refers to the parents’ ability
• to understand the disease and manage flare-ups
• and to explain all this and delegate to their children with total confidence
Children need to start ‘playing’ with their disease and its treatment and become independent as quickly as possible, even if the treatment isn’t perfect…special tools and games for children are available on this web site.