Celebrating our lived-experience volunteers - Epilepsy Queensland

Celebrating our lived-experience volunteers

Volunteer Week 2024

While the experience of epilepsy varies hugely from person to person, there’s one thing everyone seems to agree on – there’s no substitute for peer support.

That ability to connect with people who know first-hand what it means to walk in your shoes, who can relate to your challenges and emotions, is priceless, particularly when you’re feeling isolated and misunderstood, gripped by grief or living in fear.

But it couldn’t happen without the support of our incredible volunteers.

Sapphira Toh is one of those wonderful people, who give their time to facilitate our peer support groups – to give people with epilepsy and those who care for them a much-needed sense of belonging and community.

“I became involved in peer support really because I speak several languages – English, Malay, a bit of French and three different Chinese dialects – which can be helpful for someone who doesn’t have English as their first language but really needs to connect with people in the same boat,” Sapphira says.

“Tapping into lived experience is so important because you’re talking to people in the same predicament – getting advice and understanding without needing to explain anything. When you’re explaining what you’re going through to someone who doesn’t even know what epilepsy really is, it’s very different. Unless someone has actually gone through it, they won’t really understand.”

Sapphira’s own epilepsy journey began when her daughter, Valerie, was diagnosed at three and a half months old. Four years on, she’s only now finding some space for herself and is using that time to support others – and feel “less isolated” herself in return.

“When Valerie was first diagnosed, I knew absolutely nothing about epilepsy. I relied on the doctors and, in particular, the nurses who did the bulk of the educating, because online was a confusing and scary place. It’s easy to go down a rabbit hole and into things that really aren’t helpful.

“The hospital recommended I connect with Epilepsy Queensland. At that time, we were in pandemic lockdown, which wasn’t an ideal time to be learning about a new medical condition! My parents needed to learn how to administer Midazolam, so the team actually sent out ampoules of water and atomisers so that I could show them how to do that.

“Since then, Epilepsy Queensland has helped me learn about a whole lot of things, including what Valerie could qualify for in terms of NDIS support. For example, one of the items that my child needed was a monitoring camera. Leonie helped me evidence that it was essential to my daughter’s survival and that the NDIS should be funding it.

“While I’m now involved as a volunteer, I’m always gaining from the groups too. People are listening to me as much as I’m listening to them. In our group we’re only doing virtual meetings now, but it’s still having that connection to someone else who understands. I’m hoping as we reach out and grow, our groups will get bigger – giving all of us more access to the support we so desperately need.”

Peer-led Support Groups are provided through Epilepsy Smart Australia, a national partnership between the various state-based organisations, including Epilepsy Queensland. A safe and inclusive way for the epilepsy community to connect, share stories and experiences, they provide a non-judgmental space where people can draw on the learnings and support of others to help navigate the ups and downs of this challenging condition.

“To anyone who’s unsure whether a group is for them, I’d say that there’s no harm in trying.” Sapphira says.

“You can always come in, you don’t have to say anything if you don’t want to, you can always just listen, and eventually you might feel like volunteering a bit more about yourself. Or maybe you won’t, and that’s fine too.’

Groups are also given access to a wealth of information and resources to help answer questions and share knowledge.

“Sometimes the meetings are very casual, and we just go with the flow of conversation – maybe recommendations for seizure monitoring, advice around the NDIS, really useful things like that,” Sapphira says.

“Other times, if someone is facing a specific challenge, we might talk about that. For example, if someone is struggling to accept a diagnosis, we might look at coping strategies. Because acceptance is never ‘final’, in fact what you find is you’re constantly in a cycle – you get to a point where you think you’ve accepted it and then something happens or the condition gets worse, and you start the whole process again.

“We all get it, which is why it means so much that we’re there to help each other through.”

What groups are available to join?

Groups are designed based on interests or common experiences. They currently include:

  • Men living with epilepsy
  • Women living with epilepsy
  • Adults living with epilepsy
  • Youth (13-17 years) living with epilepsy
  • Young adults (18-26 years) living with epilepsy
  • Parents of children with rare and genetic epilepsy
  • Parents, carers and partners of people living with epilepsy
  • Parents of children with a new diagnosis of epilepsy
  • Brisbane young adults living with epilepsy (face to face MeetUp).
  • Epilepsy in the later years
  • Gaming and Pop Culture
  • Creative Expressions

To find out more about the available groups, or to register interest, call 1300 761 487 or email support@epilepsysmart.org.au.

Epilepsy Queensland