In the story Sharon talks about how she KNEW something wasn’t adding up and kept “pushing and pushing” for answers.

It takes courage to keep advocating for your child when the explanations that are given just don’t feel right.

As a parent it is a very worrying and stressful place to be. You don’t want to put people off side or be dismissed as an over anxious parent – but you need answers.

I’ve met many parents with a similar story. They might attend Emergency Departments or GP clinics, maybe sometimes even see specialists and come away feeling lost and unsure how to proceed.

A correct diagnosis often depends on finding the right specialist person with the right expertise. This can be hit and miss.

The rarer the condition the more unlikely you are to find someone who can diagnose it.

Often it comes down to a resourcing issue – there is a need for more people who can accurately assess pain and point you in the right direction for specialist care.

For this reason I think we need to ask for more funding for a specialist Pain Clinic at PMH.

This clinic might help parents like Sharon work through the options until she finds an explanation for her sons pain.

It would be so much better for parents to feel less alone on this journey.

Thanks to Sharon for sharing her story – I recommend that you read Our Two Year Old Has Hypermobility and Juvenile Arthritis.

This story was originally published on the ABC website and Jo has kindly given us permission to share it with you on our Stories page.

As I read through Jo’s story I noticed there were tears in my eyes.  By the time I finished reading I felt so much admiration for  Jo.  I also recognised so many feelings expressed in that story.

Stories can be so helpful to  us all.  They inform and inspire us.  Stories are also able to validate difficult feelings and help each of us face our own challenges.

It is such a privilege to edit this website and hear these stories.  Thanks Jo – you inspire us all.

I recommend you read My Baby Son Was Diagnosed with JIA.

It is so interesting to see the universal themes come into our lives when joint pain is the problem.

Cathy reflects on the types of issues that came up for her when she was at school. After reading about some of these experiences I have to admit feeling a little relieved to see that it wasn’t just us. We had lots of difficulty negotiating sport and physical education side of things.

People really struggle to come to terms with something they can’t see. If they notice that a child can run one week they don’t accept that the child may not be able to run a week later.

Kids who suffer fatigue are often regarded as lazy or uncooperative. If that same child had a sling or bandage to show injury they would be treated with more care and consideration.

Children with arthritis experience many occasions when they feel they are not believed. This is a difficult one because any normal healthy kid will try to get out of things they don’t like by saying they are sick. It can be a challenge for parents and teachers to work out when to back off and when to push a little.

Even people who know the child well like a parent or class teacher can sometimes get it wrong. People who don’t know the child well, like the once a week sports teacher, are even less likely to make a good call.

I found reading Cathy’s story comforting. It clarifies for me that despite these difficulties, it is possible to lead the life you want to.

I recommend you check out Growing Up with Juvenile Arthritis.

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.