I was very moved by Christine’s story. Even though each family has a different set of circumstances there are many similar elements in rheumatology stories.

• Your child’s health can change dramatically.
• It is not always clear what the problem is.
• As parents we can dismiss kids complaints and feel awful later when we find out it was something real.
• After diagnosis it can be frustrating when things don’t improve quickly.
• Watching your child suffer pain is torture.
• There are many losses for everyone in the family.
• It is scary.

In her cover email to me Christine made this point when asking about my daughter,

“It’s funny – I don’t know how to construct a sentence that doesn’t say something like “is she getting better?” The number of people that ask me that about Rachel (immediate family in particular) and you feel so negative
in replying “no – that isn’t how this condition works”. Getting better isn’t applicable to these kids. I just tell them she is coping better despite no real change to her levels of pain.” Christine

At the moment I am finding that so difficult myself. I am about to go to a family reunion where I know I will get lots of questions about my daughter and I feel really want to say “Oh she’s fine now, thanks.”

I find it confronting to have to say how things really are. It was helpful to read about someone else with those same feelings. So thanks Christine, I am sure I am not the only parent who will be comforted by your words.

Here is the link to the story about Rachel.