The Dignity of Risk: One Father's Perspective
As parents, we want our children to grow into healthy well-adjusted adults. When a devastating illness, such as CFIDS, strikes our first instinct is to do all in our power to protect them. We fight with doctors for a diagnosis and treatment. We fight with school districts for educational accommodations. We fight with uninformed people who want to exclude our children from social activities due to fear of contagion. We spend a vast amount of time and energy trying to provide our children with the most "normal" life that is possible.
If we are not careful, we may develop an "invalid mindset". Parents may become so fearful that their sick child may hurt himself/herself that they build an invisible protective bubble for the child to live in. Part of the natural maturing process is for kids to find out by trial and error what is good for them. If parents deny a YPWC chances to make mistakes, the feeling of independence that they themselves cherish as adults will never be experienced by their child. The chance to make your own mistakes and suffer the consequences is called the "dignity of risk".
It is not helpful for a YPWC to be told to avoid an activity, when feeling well, because a relapse may be triggered by participation. So many things are taken from a YPWC that the healthier times should be used to the fullest, if that is the child's wish. As parents we have to let our CFIDS child go out into the world, the way we let go of the bicycle seat when he/she learned to ride a bicycle, without training wheels, or the way we covered our eyes and watched through our fingers when the newly licensed driver took the car for a ride.
Of course your child is going to do foolish things. He or she may make decisions that will scare you. He or she may make decisions that will affect his/her health. These are the same problems that parents deal with if they have children without CFIDS. The only way each of us learns to set limits is by experience. YPWC should not be exempted from having the opportunity to learn the hard way. When a YPWC is allowed the dignity of being allowed to act his/her age, a giant step has been taken in the maturation process. There is a feeling of accomplishment in attempting an activity which may outweigh the discomfort that participation brings afterward. There is an inner satisfaction in acting healthy when feeling healthy that a YPWC should not be denied, due to a parent's fear that an exacerbation of symptoms or relapse may occur.
Because of school absences and illness a YPWC may become comfortable in the cocoon of home. He/she should be encouraged to take part in age-appropriate social events when feeling well. Part of the "dignity of risk" is learning to deal with teasing and impolite people. Unfortunately, these skills have to be learned through experience and parents should be a support system for the child. Each YPWC will have to develop coping skills that fit his/her personality. This, again, is no different than the rule for helping a healthy child develop.
It is so painful to watch a person you love suffer that you can become blind to the fact that the best thing you can do is to provide him/her with the chance to become as independent as possible. Be a support system rather than a "protective bubble" maker. Allow your child the dignity of risk.