New report finds childhood chronic pain impacts all elements of life

ABC NEWS (Australia)

One in five Australian children experience chronic pain, according to a recent national survey. 17-year-old Hamish Dimond was diagnosed with hypermobile Ehlers-Danlos Syndrome at age 11.  Him and his mum Helen explain how challenging the condition is.

Transcript

00:00It's an inherited condition that affects collagen, which are these proteins that make up all of

00:09your skin and muscles and like skin muscles, intestines, all that stuff. And it makes it

00:16all really stretchy, which means that everything has to work a lot harder. So a lot of people

00:22are things like dislocations or fatigue, brain fog. It must be difficult though, I wonder, because

00:31you know, I'm looking at you right now, Hamish, and you look like a healthy 17-year-old boy,

00:37but it must be difficult when your illness can't be seen by others.

00:44Yeah. So just on Friday at school, I was in a wheelchair and then today I'm not because

00:51that's just how the condition fluctuates. It's like it affects quite a lot of stuff like that.

01:01And not having people see that you're in pain or how else it affects you is quite draining.

01:10Helen, I can imagine as a mum, just watching Hamish go through physical pain and of course,

01:15obviously mental and emotional pain as well. That's got to be really difficult for you.

01:19I think like any parent, you'd gladly take it away from your child if you could. But I think also,

01:28like a lot of carers, you just kind of get on with the day-to-day of what you need to do in order to

01:34look after your child or whoever you're looking after. And it's not until someone kind of says to

01:39you, oh, that must be really difficult, that you really think about how different your life is from

01:44anyone else's. And I think it's also not until you get burnt out and you need to kind of seek

01:50support that you realise how much it is that you need to do. For example, I used to have a statewide job

02:01that involved a lot of travel and couldn't be done from home and I needed to resign from that and

02:09thankfully have a profession where I can work from home and work for myself so that I could be

02:15available on Hamish's bad days. Or just last week he had five medical appointments, one a day.

02:21And that requires a scheduling meeting essentially to try and figure out how I'm going to sort that out.

02:28Yeah. Hamish, you know, your mum talked about bad days there and obviously she's a real support to you.

02:34What does a good day look like for you? What does it feel like?

02:40For me, a good day, unable to get out of bed in under 20 minutes or so. I'd be able to be at school

02:49for a full day out of the wheelchair or without crutches, might even be able to go for a bike ride in

02:57the afternoon, stuff like that. Helen, this is Chronic Pain Awareness Week, of course,

03:05and both of you really want to highlight the sort of challenges that families like you go through.

03:12What would you like the public to know? I think if you see someone using a disabled

03:20car park or a disabled toilet who's not visibly disabled, don't necessarily assume that they're

03:26cheating and that they shouldn't have access to it. But just also that it is really, excuse me,

03:33hard for us to get support. We're kind of in a big hole in the health and the education system

03:41and the social support system in Australia. There's not really much that we qualify for in terms of

03:46support at all. So yeah, I think don't necessarily assume that if someone has showed up and looks okay,

03:54that they are. Yeah. Helen and Hamish, we thank you so much for being vulnerable and brave and coming

04:00on the show and talking to us about your challenges. We wish you both the well. Thank you again. Thank you.

Category

Transcript

Be the first to comment

Recommended