Some time ago I started a project collecting the exact words children and teenagers use to describe what it feels like to have Ehlers-Danlos.
I was motivated because children can go undiagnosed for many years. This means that they may not get the help they need.
Secondly, technology has changed. Anxious parents now sit at their computers and type in words and phrases to try to track down a reason why their child is suffering.
In many cases they might use the exact phrase their child has used to describe how they feel. In other instances they might type in a question – like the title of this blog.
I am hoping that this project will give voice to the children themselves as well as provide clues for parents desperate for answers.
Here is the latest contribution sent in by Angela. Thank you for helping us build a body of knowledge on the words children use to describe having Ehlers-Danlos.
My daughter explains that EDS makes her feel old. She has said that there are some days that she feels she has more pain in her joints than an eighty-year-old. She has tendon transplants in her knees, and she worries that someday she will have to use a wheelchair like I do (also from EDS). She then tries to work against the pain, and tries to ignore when her body tells her to stop. She does not want to get worse. Usually, however, she gets injured from doing this. It upsets her, and we have had depression issues from this. She has an enlarged aortic root from EDS, but she just tells people that there is just too much love in her heart…
If you would like to add to our collection of descriptive phrases please use the contact form on this website.
Your contribution will be very welcome and just might turn things around for a child with no answers.