We speak to three women under 30 to discover what more people need to know about life with MS.
Any chronic conditions or disabilities come shrouded in myth and misinformation, if there is any knowledge at all.
Multiple sclerosis (MS) affects more than 130,000 people, but many don’t realise that people can experience symptoms, and even receive a diagnosis of MS, early in life.
Despite 130,000 people across the UK living with MS, some still have no understanding of the life-long illness. A neurological condition, MS affects a person’s nerves as the coating that protects the nerves, known as myelin, is damaged.
Beyond the science, many people believe that MS is a condition that affects people when they are older.
“I had no idea it could affect anyone my age or younger,” explains Panida Staplehurst, who was diagnosed with MS as the UK entered the very first lockdown in March 2020.
“I was in complete denial. Perhaps due to my ignorance on the subject and lack of knowledge; I’d only ever known elderly people with MS and thought it came with age.” Initially brushing off the first mention of MS, Panida received her diagnosis of MS over the phone at the age of 25.
For Evie Meldrum, days after receiving her exam results, Evie was diagnosed with MS. During her fifth year of high school, after recovering from a viral chest infection, Evie began to experience numbness down the left side of her body.
From her initial doctors’ appointment, MRI scan to seeing specialists to receive a diagnosis, Evie’s experience was incredibly quick – and came as a surprise.
Evie explains: “I didn’t know how I was feeling or how to process it because it was all so quick. It was a period of elation when I got my exam results and then everything just seemed to crash around me. I didn’t even know how to respond or how to feel.”
Panida and Evie were both left with an MS diagnosis having to learn more about the condition. However, Lucy Wood, who was diagnosed with MS aged five, has grown up learning and understanding what MS is and how it will affect her as her father also lives with the condition.
“I would say my dad already having MS was a blessing in disguise in a way,” emphasises Lucy.
“I learnt how MS works and what you can do despite of it, and what you might need to adjust to suit the needs of an individual living with MS.”
Panida, Evie and Lucy all have one important thing in common: they were all diagnosed with MS under the age of 30. In fact, one in five people diagnosed with MS in the UK is under the age of 30. Regardless of age, coming to terms with an MS diagnosis is a process in itself.
“I did have one image in my head as to what I thought MS was – someone with severe physical disability,” recalls Evie.
“I thought that happened to everyone and it happened quickly. That was the only image of MS I had and the only knowledge – what I thought was knowledge.”
As Panida adjusted to her diagnosis, as she wasn’t experiencing mobility issues at that moment she felt that life with MS wouldn’t be too hard. However, one week later, Panida experienced a significant relapse.
“During this time struggled to walk, my face dropped and it affected my smile, then [the diagnosis] really hit me,” remembers Panida.
It is important to know, if you are coming to terms with a new diagnosis or going through a bad relapse, you are not alone.
During her first relapse, Panida arranged one-to-one counselling through the MS Society, she says: “To be honest, there wasn’t just one thing about that phone call that made me feel more positive about the diagnosis but it led to so much.”
Panida is now a member of a 400-strong Facebook community and has received answers to many of her questions.
Evie agrees that focusing on your mental health and wellbeing is imperative. “Focus on your mental health, I think that is important and it is something I didn’t do after I was recently diagnosed,” Evie admits.
“I’m only just realising now how important that was. If you’re in a good mental state the rest will follow; you do need to build a bit of resilience.”
“It may seem like it is a battle that seems difficult to overcome but trust me from my experiences you will be able to get through it.” Now, Evie, Lucy and Panida are working to raise awareness of MS and disability for the wider community.
Annually, 7,000 people are diagnosed with MS with 130 people receiving an MS diagnosis each week. Even so, the myths and misunderstanding is still prevalent.
Lucy is also working to raise awareness of MS in young people for a college project. Lucy adds: “Many people do not realise how young I was when I was diagnosed and are shocked when I tell them about my MS; I want to break the stigma of MS being an older generation disability.”
If you live with MS or are newly diagnosed, you are not alone. There is a large community, mental health support and information available to ensure you are able to continue living life to the full. Panida concludes: “Don’t be afraid to reach out and learn.”