Finding myself again : My MS story

Alice shares her experience of receiving an MS diagnosis at just 19 years old. Alice highlights how her MS diagnosis led her to rebuild her life in a way that recognises her MS without letting it control her life. 

Growing up, MS simply wasn’t on my radar. No one in my family had it, and I barely knew what it was. I was a very active teenager- hockey, ski racing, rowing- always on the move. There was nothing that ever hinted that something was quietly waiting in the wings. 

One summer, when I came home to Edinburgh from University, just two weeks after my 19th birthday, I woke up with slightly blurred vision in my left eye. At first, I brushed it off as I am short sighted which meant blurry moments were not entirely new to me. But once I put in my contact lenses, I knew that something wasn’t right. 
I mentioned it to my mum, thinking very little of it, but because eye problems run in my family, we decided to get it checked out. The optician then referred me to the Eye Pavilion, but my anxiety grew so quickly about this issue that we ended up in A&E. It was there that I was diagnosed with optic neuritis and reassured that my vision would return within six weeks. 
 

Six weeks passed. At my follow-up appointment, I was told, “Some people just take a bit longer to recover.” That was it. 
A few days later, my mum suggested we visit the GP together. 

I was then referred for an MRI, but denial took over. That sort of thing couldn’t happen to me… right?

The MRI was when fear began to sink in. I didn’t know what to expect, and part of me still clung to denial. A few weeks later, my neurologist showed me the lesions on the scan. I was not diagnosed with MS that day, but was given the label of clinically isolated syndrome (CIS). 

I started experiencing tremors and spasms on my left side that made holding things difficult. Another MRI followed, and on 5 July 2017, three weeks before my 20th birthday, and 11 months after my first symptom, I was officially diagnosed with MS. 

I was so young, and my parents were terrified. I hid behind their worry because facing it myself felt overwhelming. Choosing a treatment at that age is a huge responsibility. Thankfully, I was under the care of the Anne Rowling Clinic, where every staff member treated me with incredible sensitivity. I was too scared to search online about MS: you’re often met with the worst-case scenario. 
 

At the time, I was studying at Aberdeen University. The stress of the diagnostic process consumed my life, and eventually I left University and returned home. I felt so disconnected from myself, and the person I used to be. I quit sports, was prescribed antidepressants and started counselling, and hit one of the lowest points in my life. 

Eight years later, I still get new symptoms and have both good and bad days, but I have rebuilt my life to look after myself. I returned to University and got a first. I started my career. I’ve run two half marathons. I bought a house. I got married. I still attend counselling and take antidepressants – and I’m proud of myself for using the tools that help me to live well. 

When I had to choose my medication, their information was clear, concise and accessible. It is written in a way that made so much sense to a terrified 19 year old, who felt like a rabbit in headlights. Their resources helped me understand new symptoms and supported my decision to move to Ocrevus, which has kept me lesion free for five years. 

I often feel like my life falls into two chapters, pre-MS Alice and post-MS Alice. MS forces you to think differently about the future- like choosing a house with bathrooms on both floors, just in case. But I have reclaimed so much of who I am, I am living my life, not waiting for disaster. 
MS has taught me to take life day by day. The unpredictability of MS doesn’t offer certainty, so take the opportunities you have now and do what you want to do. 
 

If you’re reading this and facing your own diagnosis – whether you’re scared, overwhelmed, angry, or in denial – I want you to know. 
It’s okay to feel that way. Its okay to not want to face it. Life may look different, but different can still be full, joyful, meaningful, and yours.  
 

• Optic neuritis- Learn more about this symptom.
• MRI Scan - Learn more about this scan used in the diagnostic process.
• Support - Learn more about the variety of ways you can find support.