Wikipedia defines diagnosis like this -

Diagnosis (Greek: διάγνωση, from δια dia- “apart-split”, and γνώση gnosi “to learn, knowledge”) is the identification of the nature of anything, either byprocess of elimination or other analytical methods.

I find the “apart split” bit accurate. That is how you feel isn’t it? Split apart with information that your child has a condition with a name.

On one hand it is a relief to have an answer, a fact that removes doubt and mystery.

On the other hand it is a ball of fear coming at you.

You want to tell people so you don’t feel alone but telling makes it real and that makes you feel worse.

How can you reassure friends and family when you aren’t sure what lies ahead yourself?

You want information to calm your fears but information just increases them.

You want to talk to other mothers of children with this diagnosis and at the same time you are anxious about what they might tell you.

You are in a little boat on a sea of fear. If you’re lucky you and your partner can share this experience. Often couples deal with worry in different ways and that can make it even more difficult for you and your bruised heart.

You might want to talk, your partner may want to forget about it for a while. Maybe it is the other way around.

The medical folk stick to the facts. They can’t get to where you are really hurting and comfort you.

You feel alone but you are not alone. We have been where you are right now. We understand some of the feelings of shock, anger and grief. We understand how worried you feel.

I wish I could come to your kitchen and make you a cup of tea and sit with how you are feeling today.

Each day there will be different feelings. A parade of feelings and some of them difficult to bear.

I understand that right now it is too fresh to want to talk to any one at all. If that changes please come and find us and drink tea.

In the meantime don’t let fear take you over. There is so much joy and light ahead for you and your child.

Some time ago I started a list of comments from children who had Ehlers-Danlos in the hope that that list would lead to early diagnosis for other children. I have had several emails and I have been adding to the list.

Here is the latest comment sent to us.

“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 diagnosis. He just points to just about every joint in his body at different times and says “hurts” as well as having EXTREME fatigue.”

I am so pleased this information is helping people. Please consider writing down your experience and sharing it with others – together we are building our own knowledge bank.