When Your Child Has a Disease

Note: This article talks about celiac disease, but the ideas apply to any kind of disease that your child might have.

Having a child with celiac disease can be difficult for parents. As parents, we don’t want our children to have a disease… we feel our children’s pain, we want everything to be perfect for them, we fear for their wellbeing.

This can be quite a burden on our celiac children – they DO have a disease, they DO experience pain, their health is NOT stereotypically ‘perfect’, and their wellbeing IS threatened at every turn by gluten.

Celiac kids can sense what this does to their parents, and they feel bad about it.

Our children want our approval, they want to be perfect in our eyes, they want to be completely accepted and adored by us – just the way they are.

Our celiac children feel it when we are sad that they have this disease. They take our sadness personally, like they are responsible for it, like they have let us down, like if only they were better, their mom or dad could be happy. And this is hopeless for them, of course, because they have no power to change their diagnosis or to control their parents’ beliefs and emotions. So, they do what powerless people do… they act out, they have temper tantrums, they shut down, they refuse to cooperate.

Our celiac children also feel it when we are overwhelmed as we struggle to deal with their dietary needs. They feel like a burden. They feel like they cause their beloved parents a whole lot of trouble. They might conclude that there’s something wrong with them – like they’re somehow bad. This can lead to ‘bad’ behaviour – after all, when you know you’re bad, bad behaviour is all you can expect from yourself.

What can parents of celiacs do about this?

There are two main tasks here that parents of celiacs need to tend to:

  1. Deal with the difficult beliefs and emotions we have about our children being celiacs.

If we are really honest and look deep within ourselves, our dark beliefs and emotions might include:

  • “It’s terrible that my child has celiac disease.” (sadness, grief, fear, regret, anger, resentment)
  • “My child will suffer.” (fear, anxiety, dread)
  • “My child needs huge amounts of protection from me.” (fear, apprehension, dismay, aggravation)
  • “My child isn’t normal.” (anguish, fear, sadness, anger, bewilderment, disappointment, broken-heartedness)
  • “I can’t handle the gluten-free diet.” (fear, discouragement, distress, frustration)

These beliefs and emotions are natural, because the situation is difficult. BUT, they negatively affect both our mental health and our child’s, and they harm our relationship with our child. Fortunately, we can clear up our beliefs and emotions. Just being aware of them makes a big difference. Going for counselling can be a big help in resolving them.

By tending to our own beliefs and emotions, we take that burden off our child, and we become free to truly give our child the unconditional love and acceptance that they need from us.

  1. Get thorough education and lots of ongoing support for the gluten-free diet.

Sources of education and support for the gluten-free diet include dietitians, naturopaths, online sources such as TheCeliacScene, and groups such as the Canadian Celiac Association (CCA) and the facebook group Celiac Parents and Parents of Celiacs.

When we’re not overwhelmed by the gluten-free diet, our child will not feel guilty or take on the burden of our anxiety, and we will be in a better position to let our unconditional love and acceptance for our child shine through and light up our child’s life.

Having a child with celiac disease doesn’t have to be impossibly difficult for us. When we deal with our own dark beliefs and emotions about it, we can find the freedom to simply love our celiac children in all their perfection (celiac and all!), and to simply enjoy the life we have together (gluten-free and all!)

Thank you, celiac disease, for giving us the extra incentive we need to bring out the best in ourselves as parents.

P.S. Are you having trouble accepting the way your child is? Let’s work on it! Contact me and we can do sessions in my Victoria BC office, or over Skype.


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