Is Multiple Sclerosis its own worst enemy?

Navigating life with a neurodegenerative illness like multiple sclerosis (MS) often requires a unique sense of lightheartedness that may seem out of place to some, but that can make a big difference to your everyday mental and emotional well-being.

I often refer to my illness as a pyjama party, because in many ways, there are plenty of days being spent in oversized warm tops, leggings, and UGG boots, with my hair in need of some stylish intervention. The ‘party’ addition is when I don’t fall asleep every 5 hours and only half of my symptoms bother me.

Or, I joke that MRI brain scans should serve as valid ID at airports considering that the images of your brain, spinal cord and optic nerves are uniquely designed to your physique, and will remain in place for a long time to come. But, of course, these are just a few ways of how to address the fact that once again, I am lying in an MRI scanner for 20 minutes with noise that is triggering piercing facial nerve pain attacks .

Oh, joy.

In short, words matter, and no matter how much garbage life throws at you, respectfully, you owe it to yourself to make each day the best day you’ve had in a long time, and it is so much easier if you can put things in perspective and if you don’t take yourself too seriously.

Despite the internal map of my brain looking rather dishevelled, worn, and damaged by plaques (scleroses) in several places, I remind myself daily that at least I have a brain! You could say, so, that life is experienced in perpetual bewilderment, not knowing what can happen in a couple of hours, but thankfully, there’s still a lot of awe and amazement to be had when my brain and spinal cord get it right.

Convincing others of that fact is at times, a gargantuan task not fit for someone with an active lifespan of just five hours before I need a nap for two hours.

You are entitled to your opinion, but you are not entitled to your own facts

Regardless of how we face hardship – preferably with a good amount of optimism and common sense – each of us has a unique character shaped by our mental and moral values. Some will fall in line with accepted societal norms and see reality for what it is, while others might deviate from the truth and see cobwebs everywhere where there are none.

Unfortunately, in the post-COVID era, this deviation seems to become more accepted, especially in the medical world where people now openly apply their own truths to what has been established scientific knowledge for decades. And that is frightening if you are the one living with an incurable illness, and you need their research into new treatments and if I dare to dream out loud, a cure.

In the world of MS, ALS/MND, every individual diagnosed with neuro degeneration, shares a unique truth: understanding, empathy, and acceptance are invaluable gifts. And, even more so when we seek some refuge from the impact of personal narratives shaped by the challenges of illnesses like these.

One of the mission statements of IMSM is that it is my hope that those without MS can learn valuable lessons from its content, as MS affects more than just the carrier of the illness.

Sadly, MS is an illness that reveals itself unexpectedly, often triggered by something as seemingly trivial as an infection caused by a small scar. If you have relapsing-remitting MS, it feels like the reins of life become a continuous stretch of damage and partial renewal. It is eager to trigger old symptoms or introduce new ones, undermining your daily life, even go as far as cancelling dreams and aspirations. As such, MS is an ill-formed medical warning, reminding us that anything can change in an instant.

In the waiting room in my neurologist’s office on D_day, I was reassured by those who were already diagnosed – showing that touch of Irish community sense I have so come to admire since. People told me that if my diagnosis would indeed indicate MS, there were medical resources available like disease-modifying treatments, different types of physical therapy, regular MRI scans and best of all, the Irish MS community, especially MS Ireland, our national society. Still, uncertainty was visible in every breath I took, filled with a mix of anxious, sickening anticipation but also the hope for brighter days ahead. In that moment, everything shifted dramatically the moment the double diagnosis was revealed: MS and trigeminal neuralgia.

Twenty years later, I learned that the essence of MS is threefold: challenging us to adapt, being resilient and daring to make difficult choices because MS doesn’t concern itself with how long our bucket list is. What it does do, however, is adding unexpected chapters to our story where you didn’t want any, and it’s up to us to fill these pages advocating for our own new normals, even when we feel ill-equipped.

MS’s tagline: respectfully being disrespectful. Self-sabotaging, even.

Survival in the face of such trials can redefine strength; those with neurodegenerative illnesses like MS, possess unique symptoms that can only make them more resilient as time goes on. It can be considered a survival of the fittest ethos (*), an idea incorrectly attributed to Charles Darwin: “it’s not always the strongest but those who can adapt most effectively to life’s challenges will be more successful in dealing with hardships.”

Despite the coming, going and worsening of old and new symptoms, some might call you resilient or inspiring, even when you feel like your body has been hollowed out, smacked by train and trucks at the same time, and zero energy left to talk. Others may suggest “you are just not trying hard enough to do more,” unaware of your reality because “we did the same things yesterday, three hours ago, or even 30 minutes ago and now you are unable to?!”

The phrase “But you don’t look sick!” can be equally frustrating, yet outwardly, I choose to respond with grace. In my head, however, I think, “Yeah, and you look like an idiot saying it but I have more tact than you do so I keep my thoughts to myself.”

Walk a mile in my shoes!

The phrase may feel so cliché, but it highlights a deep truth: the struggles we face cannot be fully understood unless experienced first-hand. It also sounds so cringy that I could fill a Clarks shoe shop with all the footwear I wanted others to try and walk in, but they refused, and I am left with imaginary blisters on my heels that turned into open sores on my mind.

There comes a time when we need to prioritise our own wellbeing, especially when facing continual cancellations or misunderstandings from others. MS is unpredictable, affecting both our plans and our personal moments of peace. But it’s not just other people who are the target of the fickle design of neurological symptoms and their habit of taking you by surprise. Even your own me-time, like taking a long bath, going to the movies or a going for a walk with your dog can be interrupted at some stage by some neurological pinch, itch, slap, stab, stumble, numbness, fatigue, vision, dizziness, speech, memory, and plenty of other symptoms that can just pop up.

Ergo, each event you have planned can end up in the bin, cancelled until further notice. In all of this, we find not just challenge but the opportunity for acceptance, resilience, and a relentless pursuit of our goals, reminding us that even in the face of adversity, we can rise above.

It is so incredibly disrespectful to question your motives and intent. Trying to prove an illness that is so unpredictable and so different in each of us living with MS is enough already to want to go into self-imposed COVID-style lockdowns.

Clearly, there are only so many times you can apologise for having to cancel events before the person receiving the cancellation begins to wonder if you are being truthful, especially when you are the one presenting confounding reasons the longer you have MS, as some symptoms will get worse over time.

Alas, MS is not as simple. Despite fighting hard to commit to your plans, you hope that your apologies will still ring true no matter how many times you had to cancel. There’s no other way than to be brave enough and stand up for yourself.

Multiple sclerosis is perhaps its own worst enemy because it has 4 or 5 different types depending on the progression of symptoms and frequency of relapses depending on which reference material you research. Oftentimes, it creates paradoxical situations where for example, you cannot attend your neurological checkups in hospital because certain symptoms prohibit you from seeing your neurologist.

In a similar vein, when I received the award for the best blog post in the 2018 Blog Awards Ireland competition for ‘3443 Needles’‘3443 Needles’, I was unable to attend the awards show because of an exacerbation that tied me to bed.

It’s enough to make anyone dazzle. In my case, I trip over my own feet.

In short, MS is different for everyone, and no one can predict how much your multiple sclerosis might affect you. This makes your own MS a significantly individualised cookie as your own number and impact of symptoms will vary widely amongst other people with MS. While you may have eleven symptoms with a high degree of debilitating characteristics, others may have just three symptoms that result in even higher degrees of disability.

Having lived with MS for twenty years, I have navigated countless questions about my progress. “Improved” takes on a unique meaning for each of us. When questioned, it’s crucial to create the ground rule that each person’s unique experience with this condition differs and challenges the perceptions of a “degenerative” condition.

If you are newly diagnosed, contact any online support network that can be your backbone in those early months. We have all been there, and we’re pretty willing to walk with you when your world was suddenly rocked by MS.

*The term survival of the fittest was coined by the philosopher Herbert Spencer in response to reading Charles Darwin’ Origin of Species five years after the first edition was published.

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

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© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2025