|“MS Peer Support is invaluable. Every week, I look forward to my chat with Matt. The power of that one-to-one relationship, the trust we’ve built, has really helped me.”|
Late last year, Gurdeep from Melbourne was diagnosed with multiple sclerosis. Thanks to MS Connect, just one week after his diagnosis, Gurdeep was linked in with Matt, an MS Peer Support Volunteer, who has lived with the challenges of multiple sclerosis for 17 years. Matt lives in NSW, but each week they connect by phone. They talk about the different challenges Gurdeep may be experiencing, from symptoms to navigating the NDIS or just having a chat. Their relationship has ensured that Gurdeep does not face the challenges of MS alone.
Matt has been providing Peer Support for over three years and is also an MS Ambassador. He facilitates a monthly Telegroup for men with MS living in NSW, ACT, Victoria and Tasmania, as well as providing one to one Peer Support for people that have been newly diagnosed or are further along their MS journey. Matt also mentors other MS Peer Support Volunteers.
“It’s a great opportunity to share my own experiences, and to understand the MS challenges that others have to live with – no two MS journeys are the same! As an invisible disease, some might say “I’m not faking being sick, I’m faking being well.” Often, it’s hard for others to know the impact MS has. That’s why MS Peer Support is so important, especially for people who are geographically or socially isolated,” says Matt.
“Gurdeep was referred to me for Peer Support about a week after his diagnosis in October 2019. We miss the visual cues of face to face chats by talking on the phone, so really listening to the challenges being experienced by Gurdeep has been critical to building trust and rapport. We reflect on what we talked about last time. One week we might talk about a topic, like memory or applying for the NDIS, and then the next week follow up about how that went. It’s ongoing: it’s about listening and connecting based on Gurdeep’s own individual experience with MS.”
Gurdeep has found the regular phone calls helpful and explains it can vary from having a chat, to receiving guidance and empathetic support from Matt, an understanding that comes from his own journey with MS.
“Our weekly calls have also been useful to benchmark what I’ve been going through. To have Matt to turn to for support about different symptoms, and have him confirm that a symptom is typical of MS, is beneficial,” says Gurdeep.
“Around week four or five we really connected. Having someone to talk to and rely on, that ear, who is going through similar experiences has been invaluable. When I was initially knocked back for NDIS support, Matt said not to worry and talked me through the further steps I could take. His perspective and logical approach felt calming. Without him, I wouldn’t have known the way forward.”
Matt’s expertise comes from his own experience with multiple sclerosis. He was diagnosed in 2003, newly married and building his career and family.
“This kind of one to one peer support wasn’t available when I was diagnosed. I got an information pack. Over the 17 years since my diagnosis, the availability of information, webinars and technology has significantly increased. I find it personally rewarding to value add and give back to others also living with the challenges of MS. I think it could be a lonely place without that support,” Matt says.
Matt believes the key to MS Peer Support success is the rapport and continuity of the relationship between the person providing support and the person receiving it.
“From an MS Peer Support perspective, it’s all about empowering the person receiving support. I’m not a medical professional. I’m there to listen, to understand that person’s individual experience, and support with things like where to look for information. It’s then up to that person what information they’re interested in, and how many times they would like to connect. Of course, Gurdeep and I have continued to chat - sometimes we call just to say G’day!”, says Matt.
Despite living in different states, Matt and Gurdeep share a strong bond. They have inside jokes, and friendly banter about Matt’s lack of decent coffee in NSW and Gurdeep’s love of aerial ping pong (AFL) in Melbourne.
“I would encourage anyone living with the challenges of MS to get involved with the MS Peer Support program and to connect with someone who is going through a similar experience. Fundraising is critical to maintain that support, especially making sure those who are geographically or socially isolated can feel supported.”
Thanks to your participation in Be My Guest – Meals For MS, you are making sure that people living with the challenges of multiple sclerosis can feel connected and supported, from diagnosis to living well, in their MS journey.
Gurdeep was linked in with the MS Peer Support program through MS Connect – our free helpline and gateway to services for people living with multiple sclerosis, their family, friends and carers.
“For someone newly diagnosed, MS Connect is a lifesaver. I’m not just saying it. MS Connect is my go-to. The woman who answered my call was incredible – she helped me through it and followed up. The support was unbelievably good, the kind that made me ring back to let MS know how fantastic she was,” says Gurdeep.
It’s YOUR support that helps ensure vital services like these can continue to be provided, ensuring no one faces MS alone!