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 find other parents and start talking.
I found other parents at physio hydro sessions. We got ourselves organised with tea and coffee and biscuits and networking.
In the meantime don’t let fear take you over. There is so much joy and light ahead for you and your child.
Firstly, thank you for all your hard work and support over the years.
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my 11yr old girl was diagnosed 2 weeks ago. i KNEW there was something wrong with her and had been telling my GP for a couple of years but he just put it down to the good old growing pains.
so i was really excited when she got the name for her pains. but now i am so overwhelmed and freaking out about how to manage her pain without overdosing her, how to get school stuff done, how much school is being missed, hospital admissions etc etc etc. i was overjoyed when i tripped across this website! thankyou!
Hi Kim, Thanks for getting in touch. I can relate so well to what you are talking about. It’s just overwhelming at times – “a wall of worry coming at you”. I believe just even in putting your thoughts on paper is a way of helping yourself and everyone else who reads your comment. We can’t get together for a cup of tea. What we can do is meet up on the website and share the journey. There are so many families out there facing similar issues every day. We can really help each other. Over time you are going to learn lots of strategies and tricks. You will become an expert at this. Writing about your feelings and experiences will help make this website a valuable resource for others. I’d love to hear from you again and I feel certain many others feel the same.
Regards
Julia