Moray mum shares struggle with MS and taboos during Multiple Sclerosis awareness week
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A KEITH mum has told how she ‘struggled on’ with crutches because she was too embarrassed to start using a wheelchair when her multiple sclerosis (MS) progressed.
To mark MS awareness week, Susan Shand (46), has bravely shared her journey with MS, shedding light on the challenges faced by people living with the condition.
More than 15,000 people in Scotland live with MS. The condition can affect the brain and spinal cord and has a wide range of symptoms - including problems with vision, arm or leg movement, sensation or balance.
Susan's battle with MS began in 2009 when she was diagnosed with relapsing remitting MS, just a year after her daughter, Abigail, was born. Over time, her condition progressed to secondary progressive MS, leading to mobility issues that eventually confined her to a wheelchair full-time. Susan said: “Mobility issues are my main symptoms. When my MS started off I was able to walk about. But things got worse and worse and I ended up in a wheelchair full-time.
“When I first started needing to use the wheelchair when I was out and about, it was almost like it was embarrassing and so I was struggling on using the crutches. It was the thought of people I know seeing me go downhill. Or folks seeing me in a wheelchair. I didn’t want to be seen like that.”
Susan's experience mirrors that of many others living with MS. In the lead up to MS Awareness Week, people affected by MS were invited to fill out a survey about symptoms that might be considered sensitive or embarrassing. More than 250 people in Scotland filled out the survey and 50 per cent of people said they felt embarrassed by walking issues, while 89 per cent said they keep symptoms hidden due to embarrassment.
As a result, Susan decided to partner with UK charities to raise awareness of the condition and help launch the MS Unfiltered campaign this week, which hopes to shine a light on the MS topics that can feel taboo or difficult to talk about.
Susan said: “I’m one of those people who finds it difficult to ask for help if I need it. It’s the same whether it’s medical professionals, family, friends – it’s everyone. Mainly it’s because I want to be independent but also I don’t want to be a burden to people.
“We recently moved to a new house after being on the council waiting list for five years. But the house isn’t one that’s been adapted for a disabled person, so there are still things I can’t do for myself. Most of my cupboards are up high so I can’t reach any of them. Before the bathroom was adapted, the toilet was so low I couldn’t get on and off it myself; I had to rely on my daughter. When she was at school I’d either not be able to go all day, or I’d have to ask my neighbour to pop in, or I’d be messaging her at school.
“This is something I don’t tell many people about. It’s annoying that I can’t deal with basic things on my own."
The aim of MS Unfiltered is to raise awareness of the huge range of symptoms and daily challenges people with MS can face, while encouraging people to speak out and seek support.
Susan, who works from home as a conveyancing paralegal for an “absolutely fantastic” employer, continued: “Now, obviously, I see there’s nothing wrong with people seeing me in a wheelchair. If you need a wheelchair or you need some form of assistance then use your wheelchair or get your assistance."
Along with her daughter Abigail (15) and friends for support, Susan still works to be as independent as possible, and is in the process of getting a wheelchair accessible car so that she can travel independently.
When asked what advice she would give to someone struggling to talk about their MS symptoms or seek help, Susan added: “Definitely reach out to somebody you know you can trust. It’s not worth struggling on. It took me a long time but when I did go from the crutches to the wheelchair, in about 2018, I thought: I should have done this years ago. It makes your life a lot easier.
“Nothing is ever as bad as you think it’s going to be. I’m one of those people who’ll think a conversation over in my head before I have the conversation. But talking to people about my MS has never been as bad as I’ve built it up to be.”
Susan blogs on Facebook as Me Vs MS and says she’s happy to chat with anyone who is struggling to manage their MS symptoms. Visit https://www.facebook.com/mevms. You can also find out more about MS Awareness Week 2024 here.
