Inverness girl breaks the stigma surrounding ‘embarrassing’ MS symptoms to eliminate ‘shame and loneliness’
Register for free to read more of the latest local news. It's easy and will only take a moment.
Regan Kelly (24), from Inverness, was diagnosed with MS just two days after turning 16 and until then she had no idea what the condition was. In aid of MS awareness week, Regan is raising awareness for the condition to eliminate ‘shame and loneliness’ in others.
Regan endured numerous symptoms from when she was much younger, including a lazy bowel, numbness and minimal feeling in her hands, which stopped her from doing simple tasks. Her initial diagnosis was active aggressive relapsing remitting MS, but now it’s more progressive. Since her MS has turned to a more progressive type she lives with daily symptoms and disability.
She said: “The main symptoms I live with include both cognitive and physical issues. Like many people I have fatigue and issues with my attention span. Physically I can’t walk for long at all and I use a 4-wheeled frame in the house and use my wheelchair when going out and about.
“My speech is often slow and I can have a slight stammer. I struggle with choking when I’m eating and my mouth/tongue getting very tired so I eat a semi-soft diet. I also have bladder and bowel issues that I have to manage.”
Over a third (43 percent) of people living with MS in Scotland have avoided seeking help for symptoms, like bladder and sexual problems, due to embarrassment, new research shows.
The survey of over 1,400 people with MS in the UK revealed the majority (85 percent) of those living with MS in Scotland find one or more of their symptoms embarrassing. Over half (56 percent) said they were embarrassed by bladder issues, while more than a quarter (29 percent) were embarrassed by sexual dysfunction, and that half (50 percent) were embarrassed by walking issues, such as stumbling or not walking in a straight line.
The findings from a collaboration of MS charities – MS Society, MS Trust, MS Together, MS-UK, the Neuro Therapy Network, Shift.ms and Overcoming MS – have been released as part of a new campaign, MS Unfiltered, to mark MS Awareness Week 2024.
Regan said that it is ‘exhausting’ having to always be mindful of her fluid intake. For a long time she had stress incontinence, which meant that whenever Regan coughed or laughed she would wet herself.
She said: “My bowel doesn’t want to work and I ended up developing a prolapse, which caused even more problems.
“I was lucky as I managed to see a pelvic floor specialist, so I’m able to manage my bladder issues so it’s not getting any worse, for now. I’ve had lots of investigations, including going to a Urology department in hospital but they couldn’t find anything wrong with my bladder.”
Regan’s ‘lazy bowel’ means that she has to take laxatives and use suppositories. Additionally, Regan saw a dietician and adjusted her diet which ‘helped a lot’. However, whenever she gets really tired it can be hard having the energy to prepare food from scratch and cook healthily.
Regan said: “I’ve been told that later in life I may need a colostomy bag. Greater awareness of these issues in the media would definitely have helped me deal with the mental side of living with MS. I used to really struggle feeling like I wasn’t trying enough and that I was almost giving up and I couldn’t understand why I had so many symptoms.”
After battling these symptoms on a daily basis and working closely with the MS Trust, Regan is keen to raise awareness for her condition in order to help others enduring the same.
She said: “It’s important for me that nobody feels alone. It’s crucial that teenagers like me feel they can speak to a GP or a nurse who can point them in the right direction.
“It’s about having the confidence to speak up about it. I think it’s important to discuss more “taboo” topics to eliminate shame and loneliness within the community. It’s important that others diagnosed with MS know that everyone is individual, lesions on the brain can be in the same place but the impact is different for different people.
“I was quite shy about talking about it with my neurologist but now it’s time for me to speak out about MS and how it affects me.
Regan is now happy to talk about her life with MS because she remembers at 16 scouring the internet to find people like her who were openly talking about the same issues.
She said: “I have slight worries about people being cruel, but I know I can choose to not look at comments. If speaking up about my life with MS helps others to not feel alone I’d be proud.”
For more information and support on living with MS visit www.mstrust.org.uk.
