An Edinburgh writer and filmmaker living with multiple sclerosis (MS) is encouraging other people affected by the condition to come together at MS Walk Glasgow this month, saying that community can be a powerful antidote to the isolation that many people experience after diagnosis.
Roby Walsh, 38, who is based in Leith, will join family and friends from across Scotland at Glasgow Green on Saturday 19 September for the MS Society’s annual MS Walk Glasgow.
Roby, who was diagnosed with relapsing-remitting MS in 2017, will take on the 5K route. In 2022, she underwent haematopoietic stem cell transplantation (HSCT) in Florence after previous MS treatments had not worked for her.
She says the experience was one of the most difficult periods of her MS journey, making her participation in MS Walk Glasgow particularly meaningful.
She says the event is about much more than crossing the finish line: “For me, it’s become almost like a tradition. I used to take part in similar walks when I was living in Australia.
“It’s important to support and bring awareness, and of course to support funding and research. But it’s also a good way to bring people together and talk about MS.”
MS is a condition that affects the brain and spinal cord. Symptoms are different for everybody and often invisible – they can be mild or severe, and include fatigue, pain and mobility issues.
Roby lives with a range of symptoms that aren’t always visible to other people. Speaking about her experience of MS, she says: “My MS is really invisible. If you see me, you would never say I have a disability, because I think I’m good at putting on a façade. But something that doesn’t go away is the pain. I’m always in pain. From when I wake up until I go to bed early, around 9pm, I’m always in pain.
“Sometimes that affects me psychologically and drains me. You have to be kind to yourself.”
Fatigue can also affect Roby’s social life: “You want to go out with your friends and have a nice night, but by 9pm I’m like, ‘Guys, I’m going home,’” she said. “You have to adapt. That’s the word: adapt.”
For Roby, one of the most important messages she wants to share with other people living with MS is not to isolate themselves. She said: “Sometimes when we get diagnosed with something like this, we tend to isolate. I feel that isolation is a big part of people’s experience with MS.
“Maybe we need to find the courage sometimes to come out and find your people, or just ask to have a chat with someone else. You will find there are so many other people like us, and it’s okay.
“I’ve done it. I pushed a lot of people away. But I’ve learned from that mistake, and that’s the advice I would give: don’t isolate yourself.”
Since moving to Edinburgh in 2019, Roby has thrown herself back into the creative world. She is now a writer and director, has published a children’s book and made her first short film, Glitch, which is currently being shown at film festivals.
She has also found a new sense of purpose in using her experiences to raise awareness and champion greater representation of disabled people in creative industries: “I’ve connected with so many other women with different kinds of disabilities, including invisible disabilities like mine.
“I find this fire in me, thinking we need so much more empowerment around us. There can be so much more representation in industries like modelling, acting and film.
“I want people to see that there is so much more to a person, and this doesn’t define you.”
Roby hopes that message will encourage others to join her at MS Walk Glasgow, whatever distance they choose.
Participants can walk, roll or stroll routes ranging from 1K to 20K, making the event accessible to people of all ages and abilities.
“You don’t have to go for a run. You don’t have to do 20K,” Roby said. “You can just start with something like 5K.
“Even if you want to do it alone, you’re not going to be alone, because you’re going to meet so many people there. You make friends.
“I would say, do it. It’s a really amazing experience.
“In the end, you’re like, ‘Yes, I’ve done it.’ It’s a challenge with yourself as well. If I go back to some of the most difficult points in my MS journey, I could never have imagined doing these walks.
“Now, looking back, I’m really proud. I’m so proud of everything. I’m proud to be able to do the walk 100% and continue that tradition.”
Jo Anderson, Director for Scotland at the MS Society, said: “More than 17,000 people in Scotland live with MS. Roby’s story is a powerful reminder that MS is different for everybody, and that many of the symptoms people experience are invisible to those around them.
“We’re incredibly grateful to Roby for sharing her story and for fundraising for the MS Society through MS Walk Glasgow. I’m really looking forward to meeting her and cheering her on at Glasgow Green on the day.
“MS Walk Glasgow is a chance to come together, celebrate the strength of the MS community and raise vital funds to support everyone affected by MS. Every person who walks, rolls or strolls will be helping us continue our work supporting people with MS and funding pioneering research.”
MS Walk Glasgow takes place at Glasgow Green on Saturday 19 September. With 1K, 5K, 10K and 20K routes available, there’s a distance for everyone to walk, roll or stroll.
Sign up today and help raise vital funds to support people affected by MS and fund pioneering research.
Find out more and register on the MS Society website:
https://www.mssociety.org.uk/support-and-community/near-me/ms-walk-glasgow
