Spreading hope and building community: Samantha’s story

15th November 2021

From the moment Samantha opened herself up to the MS community through her Instagram blog, sharing her highs and lows with MS, she felt a wave of support and hope. Since then, she has dedicated herself to being a support for others living with MS and sharing that hope, as an MS Peer Support group coordinator.

Samantha was born in the UK, getting her first taste of travel on a university exchange program to Europe. It wasn’t long before she caught the travel bug and jumped on a plane to Australia for a 12-month backpacking holiday, where she found her home in Darwin.

She had just decided to give Gaelic Football a try when she noticed changes in her body. During a training session she felt her legs start to buckle beneath her. She felt numbness and tingling as well. Something didn’t feel right.

She was no stranger to living with a chronic health condition, having been diagnosed with a chronic blood disorder when she was 15 years old. But her multiple sclerosis diagnosis felt unexpected and scary. She says the biggest mistake she made in that moment was turning straight to Google. What she saw there was people suffering, no stories of hope. She felt frightened and defeated for the first time in her life.

Three years later, her perspective had changed. With some experience under her belt of what living with MS can really be like, Samantha knew she wanted to help people who felt the fear she felt when she was diagnosed. In 2017 she started blogging her MS experience on Instagram as @ms_butterfly89 and she says it was one of the best things she ever did.

Samantha says, “I wanted to lead the way by advocating, informing and get real about my MS experience. I just wanted others to feel hope. I want others to be able to see that it's possible to live a good life with MS.”

Not long after her blog went live, she nervously attended her first MS Peer Support meeting with our group in Darwin. Samantha was amazed by how welcoming everyone was. The more she continued to open herself up to the MS community, the more she wanted to be involved. So, she offered to help coordinate the support group and started a Darwin peer support Facebook page.

“We work together now to organise catch-ups, we try to do catch ups once or twice a month with everyone. I think it’s been one of the best things I've done, like I really, really enjoy being a part of the group,” Samantha says.

Thanks to you, the MS Society SA & NT has 22 MS Peer Support groups meeting at various locations in Adelaide, regional South Australia and Darwin. These groups are a safe space for people living with MS to make friends and share the challenges of living with MS with people who really understand.

“It's been great to volunteer as one of the peer support group leaders up here [in Darwin] and since I've joined and got connected with the MS Society, I've been so inspired by the work that they do,” Samantha says.

“It is one of the most difficult things to live with and people really do need that support. The MS Society does make such a huge difference to lives of people with MS and its spurred me on to want to help more.”

For her birthday this year, Samantha asked her friends, family and colleagues to donate to the MS Society. She was absolutely blown away by the support she received and raised a huge total of $1,753 for people living with MS!

Samantha has a heart of gold and it’s incredible to see people in the MS community supporting each other to get through the daily challenges of living with MS.

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Spreading hope and building community: Samantha’s story