The day I was diagnosed with Multiple Sclerosis, I remember the sun pouring in the hospital window behind the neurologist. It was so bright I was squinting and could hardly see her. It was September 2011 and I was 25. I was working in customer service and had gotten engaged the year before - we were mid-wedding planning and had just closed on our house.
For years I'd been experiencing odd symptoms, but nothing severe enough to send me to a doctor. My feet tingled like I had permanent pins and needles, several of my fingers were numb, sometimes my whole body would be itchy, but scratching brought no relief, and the fatigue wasn’t your regular Monday-morning tired; it was a bone-deep exhaustion that felt like swimming through concrete.
When the neurologist finally said "MS”, I said: “I know.”
I had spent months pretending to concentrate at work, but really using every spare minute to google my collection of weird and wonderful symptoms. I knew I could no longer ignore the fact I clearly wasn’t well, but I have never been known for my patience and so thought I could probably figure it out myself. I went down every rabbit hole there was, but in the end when I hit on an accurate description of Lhermitte’ sign - positioning your neck in a certain way causes an electric shock sensation down through your body - it was as though the pieces fell into place.
In hindsight, if I had simply gone to the doctor when I first realised there was something up, maybe I wouldn’t have needed to figure it out myself, but that just isn’t how I roll.
People expect these moments to be cinematic - dramatic music, profound realisations, a montage of your life flashing before your eyes. But real life isn't a movie. It's messy and mundane and sometimes, when faced with life-altering news, your brain fixates on how smug you are to be proven right!
The weeks after diagnosis were a whirlwind of doctors' appointments, medication discussions and, worst of all, “coming out” to friends and family. Some people took it in their stride, taking their lead from me. Others completely overreacted - one colleague even cried, which gave me an awful fright. Silly me thought once I had everyone told, that would be it, it could sink into the collective memory and we would all get used to it.
Little did I realised that the people I knew at 25 wouldn’t be all the people I would ever know and, to this day, I still find telling people incredibly awkward. Sometimes I let it go way too long and then it starts to feel like some kind of big secret!
Fourteen years on, I won't pretend it's been easy. MS is unpredictable - one day you're fine, the next you're struggling to stay awake past lunch. But here's the thing about being diagnosed with a chronic illness in your 20s: it forces you to prioritise. Life becomes less about long-term career goals and more about what brings you joy today. MS has given me a peculiar gift: the ability to appreciate ordinary days. And that is what I wish for: many more ordinary days.
Diagnosis wasn't an ending, it was simply a plot twist in my story. If I could go back and tell that shell-shocked 25-year-old something, I'd say this: "You're still you. MS will become part of your identity, but never the whole of it. And, yes, there will be hard days, but there will also be fun, adventures, love, and so much laughter.
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