“My Muscles Feel Heavy”-How Children Describe Ehlers-Danlos

Children with Ehlers-Danlos  or  Hypermobility Disorder struggle to put into words how they are feeling. This morning at our Saturday Jointpainrelief group a couple of the mothers talked about phrases their children used.  Here is a few-

  • “My bones feel like cement.”
  • “My muscles feel heavy.”
  • “I am sick of feeling so tired.”

These children experienced disadvantage at school because-

They  might find it difficult to hold a pencil and write.  This might lead to the conclusion that they are “slow learners”.  They can’t keep up with class work and might be judged as lazy by teachers.

Discomfort makes it very difficult for them to sit still in class.   They are often in trouble for fidgeting.

Many, but not all, children with this condition may lack co-ordination.  This means that they are the last to be picked in team sports.

I heard of one case this morning where the child became so humiliated by her experiences at school that she became depressed and suicidal from a young age.

School can be a tough environment.  Teachers under increasing pressure to get results can be frustrated by children who appear to be unco-operative.

Better information for teachers could lead to earlier diagnosis and physiotherapy for the child.  It also could lead to a more understanding classroom environment.

I would love to collect all the phrases kids use to talk about the experience of Ehlers-Danlos.  It is possible that parents may be searching with these very phrases to better understand what is happening to their child.  Our list might help them find answers and help a bit earlier.

If your child has been diagnosed with Ehlers-Danlos or Hypermobility disorder please send me the words they use to describe how they feel –  we will publish this list on our website.

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