Living Like You | MS: Living in denial

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Woman in sat on bed with laptop and dog

Time for a group hug!

This is a shout-out to anyone who feels they are alone and in need of some support, especially if you’ve been recently diagnosed with Multiple Sclerosis (MS).

What’s in a name?

There was a change the moment I received my MS diagnosis - the time before and after was distinct. Before my diagnosis, I had approximately six months of clearly-defined symptoms and knew that these extremely intense, inexplicable sensations were anything but normal. On the day of my diagnosis, it didn’t feel as if the labels ‘Multiple Sclerosis’ and ‘trigeminal neuralgia’ changed the emotional impact that much, just because they now had a formal title.

In fact, I felt relief, almost giddy, even. I left the hospital saying, ‘I have MS, and it’s not that bad!’ (or so I thought). Now I knew what to do and where to go next to eliminate both (or so I thought… again). At last, the beast had a name.

When I heard other people with MS saying they felt similarly happy and relieved, I thought, “I’ve found my tribe, my people”. It’s something non-neurologically challenged people find hard to understand, but in the MS world, we often say ‘You only get MS when you get MS’.

Denial or no denial? What’s in a name?

In the weeks following my diagnoses, some of my friends said I was clearly in denial. That, of course, was their prerogative. However, it was my own prerogative to be in denial, or whatever emotional state I had to be in. Perhaps I just needed to be in denial out of self-preservation, to cushion everything and everyone around me from the shock of what was, not just my lifetime of MS, but theirs by association.

After all, it had been months seeing the doubt and concern in people’s eyes; how could you possibly have stabbing pains behind and in your eye and ear from a door slamming shut? Not to mention the other triggers like kissing, eating, laughing, cold air, the vibration of walking and many other triggers that seemed to have nothing to do with those senses?

My friends may have been right, I was in denial for a full five weeks. I told people I would be all right, that I could work every day and that, one day, trigeminal neuralgia would be gone forever.

Fatigue and cog fog galore!

We all know certain MS symptoms, like cog fog and fatigue, might attempt to steal your strength, wit and temper. On the other hand, you might encounter symptoms that will prove you are much stronger than you ever gave yourself credit for. In both cases, there will be shortcuts, workarounds and life hacks you may discover, whilst you learn how to deal with MS in your own way.

Quick lesson

During my five weeks of denial, I physically learnt that being negative was more draining than being positive. Whenever a negative thought about MS appears in your mind, think of a happy moment in your life.

In fact, I’ve gone as far as getting a dog. People often said, “But you have sound sensitivity and trigeminal pain, how will you get to look after a puppy?!” My answer followed: “Yes, but that puppy is taking my mind off the pain - as excruciating as that pain is - because he needs me more than I need another day cursing at MS. He is therefore my four-legged holistic treatment!”

What type of holistic treatment might work for you? Different types of activities, including exercising, meditation and even music, can help with management of MS. Read Jamie’s story, as she discovers whether music really could improve her MS symptoms, here.


The Contrast Between Positivity and the Realities of MS, Multiple Sclerosis News Today

Your Everyday Guide to Living Well With Multiple Sclerosis, Everyday Health

Mind-Body Connection and MS, Overcoming MS

Tips for a Positive Outlook When You Have MS, US News



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