Fighting for my validation for my child

Posted August 29, 2019

My daughter’s previous rehabilitation doctor told us that the same program applies to hEDS as to fibromyalgia. “The pain is between the ears. We’re going to fool you and reset your brain. Your brain sends the wrong signals and we will treat that.”

Because I did not agree with the rehabilitation doctor, I was almost certain that he would make it difficult for us.

My daughter had 300 hours of absenteeism last school year. Because my daughter was not going to do the fibromyalgia program, the rehabilitation doctor call in the school doctor: his advice would have major consequences. According to him, my daughter could do anything and 300 hours of absence is unnecessary, and therefore punishable.

On her 14th birthday, last July, we had an appointment with a rehabilitation doctor who specialized in hEDS. He is my hero, and I am grateful that my child is taken seriously. I am glad that finally someone sees that I am rightly concerned about my child. That her pain and fatigue are not an intention – and that I am not a mother with Münchausen by proxy!

We are in the Netherlands, where parents with children who have EDS are often put under extra scrutiny on suspicion of child abuse.

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