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Volunteer for MS Trust, Regan Kelly (24) from Inverness was diagnosed with Multiple sclerosis (MS) as a teenager, but for years the doctors ‘brushed it off as teenage girl stress’.
Throughout Regan’s childhood she experienced symptoms of MS that gradually worsened with time. At the start of the summer holiday, prior to getting diagnosed with MS in 2015, Regan deteriorated as her symptoms became gruelling day in and day out.
From extreme exhaustion to randomly collapsing, Regan struggled to get through each day without experiencing a series of debilitating symptoms that gradually took over her life.
She said: “I was really panicking about going into school as I didn’t know how I was going to cope. I had been put in a neck brace prior to getting diagnosed because we didn’t know what was wrong with me.
“I would look down and I’d collapse, so to then go back to school, I was terrified.”
The teenager went through an unhealthy cycle of coming home from school ‘floored’ and sleeping until the next morning.
For over a year her symptoms were brushed off as ‘teenage girl stress’ or anxiety.
It was then thought that Regan had a trapped nerve, however when she started going to the GP with more and more symptoms, a junior doctor suspected it was more than something that would ‘just sort itself out’.
She said: “The junior doctor realised that I had weakness down one side of my body, which I never really noticed before.
“I used to wake up with so many random symptoms and I just thought it was normal. I’d wake up and not be able to use my hands, and whenever I’d look down I would get tingling down my legs, which progressively spread throughout my body to my neck.”
She said: “I didn’t consider that anything was wrong with me until they said they needed to book me in for an MRI scan.
“On the same day as my scan, I got diagnosed with MS.
“I actually had no idea what MS was, I thought I would just get some antibiotics or some kind of medicine and I would be fine.”
The schoolgirl was soon to learn that she had a lifelong condition that affected her brain and nerves.
Regan and her family began to put the pieces of the puzzle together as they realised that what they might have considered ‘clumsiness’ or ‘stress’ were actually critical signs of MS.
School was challenging for Regan as she suddenly became known as ‘the mobile phone’ that occasionally needed ‘charging up’. While her teachers and the school supported Regan’s needs by adjusting her time table and subject quantity, she still felt the need to keep her diagnosis away from anyone finding out.
She said: “I tried to keep it to myself until I needed a wheelchair or a walking stick and then there was obvious evidence of something being wrong with me.
“I didn’t know much about my condition, so I wasn’t ready for people to start asking me questions about it. I just carried on plodding along and buried my head in the sand.
“I also never wanted to come across as if I was attention seeking or being dramatic, so I just kept quiet and thought nobody had to know, but that only created more issues as there was then this secrecy around what was wrong with me.”
Reality began to sink in for Regan after she attended numerous hospital appointments that suddenly absorbed all her time. Her diagnosis became incredibly scary due to the negative perception of MS she had previously seen on television.
She said: “I remember crying my eyes out as from what I did know about MS was taken from soap oprah’s on the TV and it was always negatively portrayed as a quick diagnosis, disability and death.
“I spiralled for a while as I remember feeling so angry about not being in control of my body. There were things going on inside me that I couldn’t see or understand, but I could see the effects of it and that’s what really upset me at the time.”
MS not only affected Regan physically, but also mentally and had to attend Khams for support.
She said: “It was really mentally difficult to feel out of control and have my life go differently to what I had expected. I really struggled to validate my own feelings as I didn’t want to be seen as being dramatic, but in reality it was a massive life change for me.
After this, Regan made it her mission to learn all she could about MS to not only further educate herself but others across the Highlands who might be struggling with similar symptoms.
Regan now works as a volunteer for MS Trust, and other charities across the board, to help raise awareness about the condition and young girls struggling in the Highlands.
She said: “I remember coming home from being diagnosed and I just wanted to see people like me and to see that they were doing okay, so that I knew I was going to be okay. But, there was no one my age, so now I just like to raise awareness so that no one feels alone with it.”
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Sarah Carter is a health and wellness expert residing in the UK. With a background in healthcare, she offers evidence-based advice on fitness, nutrition, and mental well-being, promoting healthier living for readers.
