MS: a life filled with paradoxes

Has anyone ever told you that your life with MS is filled with contradictions and paradoxes? That nothing seems to make sense, no matter how much you try to explain what’s happening and how hard you work to prevent bad events from taking over your life?

Shortly after my diagnosis, a friend observed that I often expressed opposing thoughts about my condition. One moment, I would voice concerns about my future—my relationships, work situation, and daily life—while the next, I’d adopt the opposite of what I just said despite the commonsensical value and validity of the first. Despite my urgency to find my footing in a world transformed by MS, I found myself in need of time and space to delve deeply within, to re-establish myself amidst an onslaught of new normals.

Of course, people offered well-intentioned advice and I gladly accepted all, but when managing a neurodegenerative, chronic illness that continually shifts the goal posts, it can be easy for others to suggest solutions when their understanding is rooted in a world free from similar experiences. After all, I was  newly diagnosed; every day brought the unpredictable onset of neurological symptoms wreaking havoc one moment and disappearing the next.

Just like that.

I told her that adapting to something so wildly unpredictable, the relentless cycle of adaptation was not only disheartening but also deeply confusing. I had embarked on a strict treatment regimen that included Rebif injections that burdened me with severe side effects, and at the same time, a daily complex regimen of 16 pills—changed to Brabio and 29 today—targeting various symptoms: neuropathic pain on my left-side, trigeminal neuralgia, severe fatigue, vertigo, and more.

Each new medication introduced my body to a whirlwind of side effects and adjustments, each one resonating against the backdrop of a condition shrouded in uncertainty. I told her that I welcomed any advice, but that I needed to make choices aligned with my medical team’s guidance and not that of snake oil sellers. Added to this, I moved to Ireland 2.5 years prior, and had no idea how or where to go for everything related to being diagnosed with an incurable illness. Thankfully my friends were able to guide me along where possible, but it still felt as though I was attempting to navigate a colossal sailboat without a map, at the mercy of a central nervous system that seemed to hold its own agenda.

So yes, my life was filled with contradictions and paradoxes, but isn’t everyone’s? The world and everything in it would not turn if it weren’t for forces pulling or pushing things forward in ways that, despite all scientific research, we still have trouble understanding why, how, where, and what are we truly doing here on this little blue planet.

Everything that defines us—our motivations, behaviours, and identity—finds its origins in our brain. The grey matter between our ears empowers us to create breath-taking art, lead to pioneering scientific research, and create something from nothing. Yet, our brain, this very organ can also give rise to debilitating neurological conditions, such as epilepsy and neurodegenerative diseases like MS and ALS (MND), and no one is free from being diagnosed with these, just ask Eric Dane and Christina Applegate.

This enormous contrast inspires awe within me, day after day. What’s more, in certain cases, the brain has the remarkable ability to heal itself. The potential of the brain is limitless, and yet, for those of us living with MS, it serves as a reminder of both the inability to do so, creating a fragility and the resilience.

Such reflections may come across as philosophical, considering that life takes us down unpredictable paths as soon as we’re born. From the moment we take our first breath, the process of aging begins, linking us to the onset of illnesses and disorders that will force us to adapt and reinvent ourselves every time.

For people grappling with incurable illnesses, this perspective can diverge dramatically from that of those who enjoy good health. From my own experience, I have come to believe that my diagnosis of MS was necessary for a life reset—albeit a painful and jarring transformation for myself and those around me.

And this is where paradoxes begin to take root, as any neurodegenerative illness will seem difficult to grasp for anyone who doesn’t share our personal spaces. As a 20-year-veteran, nothing seems to rattle me anymore, whether it is feeling energy run to my legs and into the ground, leaving me completely depleted in the middle of a road or while talking. Or, excruciating stabbing facial pain hits me every few seconds for about two hours, and other bouts of neuropathy kick in. I keep on apologising for things I shouldn’t anymore to people who still don’t understand why I can’t do things because, let’s face it, sudden loud noises creating stabbing pain in your eye and face, it does sound rather imaginative, doesn’t it?

There is only so much you can and should explain and/or apologise for. Just don’t let it bring you down. Your life matters, no matter how many paradoxes and contradictions come your way.

Awards

◾2018 Winner Best Blog Post, Ireland Blog Awards by Ashville Media Group, Dublin, Ireland

◾ Everyday Health: Top 10 MS Blogs to Follow in 2025, 2023, 2022, 2021, 2020, 2018 #EDHbestblogs

◾ Feedspot: Top 45 Best Multiple Sclerosis Blogs and Websites in 2025, 2024, 2023, 2022, 2021, 2020, 2019, 2018, 2017

◾ My Therapy: Multiple Sclerosis Blogs: 10 of the Best

◾ MyTherapy: Best MS Blog for Simplicity 2018

◾ Blog Awards Ireland: Winner Best Blog Post 2018; Finalist 2017, 2015, 2014 (Awards competition discontinued from 2019 onwards)

© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis and Me, 2026