'I have a sense of purpose again' - Rotherham woman on her MS diagnosis and volunteering to help others

The 42-year-old, from Rotherham, lives with Multiple Sclerosis, a lifelong condition that can affect the brain and spinal cord. For Jo, MS symptoms include fatigue, numbness and weakness, stabbing pains, vision problems and cognitive and memory difficulties.

“This is life now,” she says. “It continues to be a very, very difficult journey. Your life just turns on its head.”

Jo received a formal diagnosis in November 2021. A the beginning of that year, she had contacted her GP, struggling with headaches, vertigo and tinnitus.

In a matter of months, more symptoms, such as fatigue and weakness, started to become problematic and, when the former drama and music teacher, tried to return to school after the summer holidays that September, she could barely walk or talk.

“I thought once I clicked back into work and a routine, I’d keep going. But by lunchtime of that day, I had to be sent home,” she recalls. She has not been to work since.

Tests revealed Jo had lesions on her brain and spine and she was diagnosed with MS. “It was a total mix of emotions, the relief of I’ve got a diagnosis…and that it wasn’t immediately life threatening. But then the reality of starting to understand what Multiple Sclerosis was dawned on me.”

After her diagnosis, Jo tried to reach out to her local MS Society group for support but found out it had been disbanded during the Covid-19 pandemic.

An opportunity then came up for a Volunteer Group Coordinator role at the MS Society’s Sheffield and Rotherham group and Jo decided to apply. “We’ve been focused on building the group back up,” she explains.

“It’s wonderful to feel I’m doing something worthwhile. It’s incredibly supportive and I volunteer when I can, but I can also put myself, my family and my MS first so there’s no pressure if I’m having a bad day.”

“There is never an expectation, whenever I’m unable to do anything because of my MS,” she continues. “It’s just not a problem because you’re surrounded by people who get it and understand.”

Jo, who documents her MS journey on video platform TikTok to help people understand more about day-to-day life with the condition, and other volunteers have worked to get a seated exercise class going again.

“Last Christmas we brought the group back together...There were tears and emotion with people meeting friends again. But we also saw how people’s MS had declined during Covid.

"Now people are back to exercising we’re looking at buying new weights as their strength has improved so much. I see that in myself too. Now we just need to get out to more people.”

A group relaunch event has recently taken place in Rotherham, offering people living with MS, and their families and carers, the chance to find out about the group and share their thoughts on support and activities they would like to see.

There are plans in the pipeline to set up a social group, MS choir, mindfulness class and art group.

To support its ambition, the group is looking for new volunteers and is particularly keen to find people to be a communications volunteer and admin volunteer. Members say it would suit anyone who can give a little bit of time, whenever works for them.

Jo says: “Volunteering has given me back the sense of purpose I lost when I had to leave my career. It’s given me a community to be part of. It’s given me the opportunity to keep making a difference.

"Everyone talks about being kinder and helping others. This is exactly a way you can do it in however much time you can give.”

Sally Snowball, the Regional Development officer for the MS Society, says Jo is helping the MS community to reconnect again. “She’s only relatively recently diagnosed with MS but I’ve seen how passionate she is about bringing people together who have a shared understanding of MS, so that no-one needs to feel alone.”

Anyone interested volunteering for the group can email [email protected]