Initial Diagnosis - ‘Have you heard of MS?’

I’ve lived with MS for almost a decade now and I’ve encountered numerous other people living with MS, most of whom have gone on to become very good friends of mine. One of the first topics of conversation between friends with MS is the initial diagnosis of their condition.

The when/where/how of their journey with MS. These stories can vary greatly depending on the stage of life, the family circumstances, and the financial circumstances of the person around the time that they were diagnosed.

However, one thing always strikes me when people talk about their journey to being diagnosed with MS. It’s either extremely rapid or very long and arduous. There doesn’t seem to be any middle ground. Most people I’ve encountered have either been diagnosed in a number of days or number of years. It’s either like ripping off a band aid or else it’s a long and protracted trauma.

For me it was quick and painful. I was admitted to hospital on a Saturday with optic neuritis in my right eye and by Wednesday I had an indication that MS was the culprit. It would be two long and excruciating weeks before this was confirmed in clinic.

I’ll never forget sitting in that neurologist’s office and being told the news. ‘Have you heard of MS?’ he said with the kind of tone that you’d use for a sentence like ‘have you heard that it’s going to rain later’. In that instant I looked out the window and thought of the 7 billion people on the planet and how I would rather have been anyone else other than this person who was sitting there getting their life turned upside down. The weeks that followed were a complete blur. Being diagnosed with MS is like an earthquake that starts at an epicentre and ripples out until it touches every area and every relationship in your life.

Imagine for a moment, that your life is like a puzzle. Every facet of your life is a different piece and they all connect together. Getting MS made me feel like someone had taken a sledge hammer to the puzzle and I was left trying to pick up the pieces. Some of the pieces were gone forever and some didn’t fit the same way that they used to.

That phase of my life was one of the toughest periods that I have ever lived through, but it also taught me so much about myself. I look back now and I see it as a blessing in disguise that my diagnosis took me off a particular pathway that wasn’t truly meant for me. The beauty about such a tumultuous period of time is that it creates space for great change and inevitably huge personal growth. It was a period of introspection and self-evaluation.

When life is really stripped back to the bare bones, it brings a certain amount of peace. At one point I felt like I had nothing more to lose and it made me feel fearless. It spurred me on to say yes to offers I would have previously declined out of fear and hesitation. I travelled and pursued new interests which, in turn, brought new friends and new experiences.

Although the initial period after an MS diagnosis can be mentally and physically very tough, life can and will get better! The beauty of losing pieces of the puzzle means that it creates space for new pieces. It’s all about a change in perspective. The puzzle might look a little different these days but there are pieces that I probably wouldn’t have if it wasn’t for that initial diagnosis. There’s a piece for my dog, my partner and the countless friends that I’ve made. There’s a piece for the passions I didn’t have before I got MS. The pieces are a better fit with no empty spaces anymore. There’s even a piece for my MS. Although it can be a struggle sometimes, it’s a part of me and I wouldn’t be the person I am today without it.


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