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.
You’ve got a great idea!
I’d like to recommend resources where you can find more parents so you can survey a wider range of people around the world.
http://www.ednf.org (Ehlers-Danlos National Foundation in Los Angeles, California, USA)
http://www.chiariconnectioninternational.com (Chiari Connection International [CCI], based in the US. Since 13% of Chiarians have Ehlers-Danlos, you’ll find a lot of parents of Chiarians who also are dealing with EDS. CCI has an online parent support subgroup through Yahoo Groups.)
There’s a Canadian EDS group called CEDA also accessible through Yahoo.
I wish you all the best on your project.
I have eds, and im now 17, they only way ive been able to describe it some times is:
“It feels like my bones are bending and going to break”
“Feeling Like My Fingers Need To Click (knees, Toes, Wrists etc)”
And Feeling Very Weak, Like Just Piking Up A Cup Would Feel Like My Arm Was About To ~Break At Some Points
I Hope I Helped
This is great information for me. My son has Autism, mostly non verbal but is in extreme pain. One thing he does “say” is “my brain hurts”. He has recently been diagnosed with Classical EDS after years of trying to find an answer to why he is in such severe pain. With his Autism, the doctors did not believe me and though I just didn’t understand my son. Finally a diagnose. He just points to just about every join in his body at different times and says “hurts” as well as having EXTREME fatigue.
Both of my kids have HMS and are dev delay with one having autism. My daughter says that she’s tired alot, her muscles burn, her body hurts. I also have HMS and used phrases like my leg feels like it’s about to fall off, it feels like it’s not sitting right.
Hi Amy, Thanks for adding to our phrases list. It is so valuable to see how each person describes their experience. There will be others who will read your words and feel better because they will realise they are not alone. I appreciate you taking the time to get in touch. Best wishes to you and your family. Regards Julia