I was asked to write about my experiences about how it feels, being a father of a child that suffers from fibromyalgia and the chronic fatigue syndrome. Of course, this is a very personal matter. The way you deal with the lingering illness of your child depends on a long list of many factors. I guess there are two categories that play a key role: inner and extern factors.
Inner factors that come up in my mind, are: the parent’s nature, maturity, wisdom, life experience, a good sense for realism, energy, personal health (mentally as physically), emotional intelligence, empathy, being a balanced person, evenness of temper,…
For the extern factors or circumstances that could play a role, I think of the personality (character) of your child and the relation that you both have, the age, if your child has a job, if your child is married or has a stable relationship or not, the nature of your own marriage/relationship, the personality of your partner (the child’s other parent), if you have several children and the way they deal with it, how your professional life is organised (for instance, does it absorb all your time or does it leave you enough time to spend on your daughter’s or son’s problems?), financial situation, material supplies, etcetera...
It is crystal clear that when you stand firm in life, it will be ‘easier’ to deal with the health problems. But “dealing with” is an euphemism. In fact there is no such a thing! Books like ‘Parents of fibromyalgia children for dummies’ don’t exist either. Even if the inner and extern factors are fulfilled in a positive way, you will always get confronted with all kinds of situations you never experienced before and that demand an instant solution or reaction. For instance, changing moods and emotions, a behavior or reasoning that seems illogic to you (sometimes even contradictory) and it is only after a while that you start to realize that during those moments, when your child spits out its frustrations and darkest thoughts, it probably suffers severe pain. I don’t think there is much you can do then just listening and comforting (provided that the child allows you to do that!).
In legal texts, I think it is called ‘ex-haerede non-material damage’. You will suffer mentally the moments you know that your son or daughter suffers heavily. In my case, this pain, that actually comes from your child and is ‘inherited’ by you (so to speak), is mostly combined with a feeling of powerlessness.
You get frustrated that you are powerless to help the kid. And as a parent, you are supposed to solve the problems of your children. Isn’t that what your child and everyone expects you to do?
No-one in his right senses wants to be sick. Everybody wants to be healthy. But when you are a father of a chronical ill child, you are dying to take over the cross that it is carrying if that could take the pain away. But at the same time, you realize that the universe doesn’t work that way.
For a parent it is difficult to cope with the whole situation. There are countless ways to do it wrong; the reaction from your child will tell you when you hit wrong. You can also fall in many traps; a lot of charlatans offer a therapy that will cost you a fortune but won’t heal your child.
Flexibility is also an important key word. If you are not a flexible person, then you will learn to become one. Adapt your life in a way that it brings maximal comfort to the needs of your child. The moment when your child feels enough energy to do things in which your participation is required or wanted, then capture that moment and be available!
Being a father of a child that suffers from fibromyalgia and the chronic fatigue syndrome is a bad experience. Usually, experiences are important since they help you to grow as a person. But these nasty experiences are completely superfluous, believe me. The suffering of a child is one of the biggest injustices in life that no-one accepts and for which there is no rectification. It is just there. Try to live with it and stay strong! Your child needs a strong parent!
There is Chinese saying that brings me some courage: even if I knew that the world was going to end tomorrow, I would still plant a young tree today!
I hope that you will find some courage and strength too: children and parents.
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