World MS Day 2025: What I would tell my newly diagnosed self
World MS Day 2025 is upon us, returning to where it all began: our diagnosis, and the earlier the diagnosis, the better.
Mine happened exactly 200 days after my first symptom. Pretty short and neat. Looking back, walking into the Emergency Department in my local hospital that cold, wet February morning was still the best decision I ever made (OK shared first place with moving to Ireland 2,5 years prior).
Anyone navigating life with multiple sclerosis understands the uncertainty that clouds their vision of the future. These conditions can cast a shadow over hope, turning even the simplest moments into daunting challenges. Yet, within early diagnosis lies the potential for transformation; a restart that can either forge our strength or test our resolve, shaping us in profound ways, at least for a time.
From day one, you strive to become whole again, fully aware that you will never feel complete again, so you do your best to fill in the missing pieces. When you go to bed at night, you might tell yourself, “I wasn’t able to do this or that, but tomorrow’s another day. If it doesn’t work out tomorrow, there’s always the day after.”
If I could go back twenty years and talk to my newly diagnosed self, I would start by saying: “Life with multiple sclerosis is tough, but it is always worth living. Taking control of your life may feel like a Machiavellian struggle for power, but in the end, you matter, regardless of how sick you are.”
Twenty years ago, my neurologist said rather bluntly, “You have multiple sclerosis.” At that moment, I realised that life, as I once knew it, was over. I felt blood rush through my ears, and my mind became a whirlwind of thoughts, filled with shockwaves of confusion, fear, and uncertainty. Sadly, unlike certain cancers, MS does not go away after intense bouts of pharmaceutical intervention. I realised that whatever had physically happened in the past five months, would never end. The long, physically painful road that now lay ahead became an endless battle unlike any other I had ever encountered.
If I ever needed a plan for the future, this was it.
Follow your medical team’s advice
“You must make lifestyle changes, like your work, and…”
Being rather blunt in her delivery, my neurologist meant well, of course. On one side of the desk sat the best neurologist in Ireland, who was well-versed in all the technical aspects of MS and on the other side sat I, experiencing symptoms that were raging through my body. A multitude of triggers made no sense; for example, in bouts up to two hours, every 2 or 3 seconds, talking, laughing, kissing, cold air; the vibration of feet touching the ground while walking; even sudden and/or loud noises; and plenty of other sensations caused piercing nerve pain through my left eye and ear, as well in a small area behind my left ear. Or, an 8-meter distance between my fridge and the couch suddenly felt like the distance of a marathon, including the feeling I was walking on ancient Greece’s rocky roads, not knowing where to put my feet. Vertigo, the feeling the floor dancing below my feet or even more ridiculously, my cognition running out of juice while standing on a staircase, not knowing how to walk up or down anymore. My left arm and leg felt as if they were stuck in a vice, as if a tight rubber band was cutting off life.
It was clear that my brain was shortcircuiting somewhere and somehow, but it refused to answer why.
In short, I stared at my neurologist in shock, mentally and emotionally numb and unable to explain which trigger set off which symptom or vice versa, and like so many other people with MS, I was afraid of not being taken seriously.
I had no idea what to expect as MS was a foreign concept to me—something that happened to other people. The first four neurological symptoms I experienced before my diagnosis were excruciatingly painful, debilitating, and unpredictable. During my appointment, I learned that relapsing/remitting MS would force me to break down future plans into snippets. Planned events would more often than not be cancelled at the last minute due to the arrival of worsening neuropathic pain, severe fatigue or eyes that refused to cooperate.
As such, I needed to understand how to be confident about the future.
Treat your body with kindness
The list of neurological symptoms (50+) associated with MS is frightening, but nobody will experience all 50 of them. Some people will have fewer symptoms than you but might have more physical disabilities, while others will go through life with faster neurodegeneration, or vice versa. For this reason, MS varies significantly from person to person, with no two individuals experiencing the same symptoms or progression.
As such, depending on your type of MS and symptoms, having a neurodegenerative illness by its very nature goes hand in hand with the necessity of having to adapt to almost everything around you.
Take neuropathic pain, for example, which can be triggered by the most nonsensical reasons; it can remain constant or may worsen with heat, stress, infections or fatigue, or disappear without rhyme or reason.
On top of this, neuropathic pain can translate in all sorts of ways, which are equally nonsensical: it can feel like tingling, numbness, or prickling (pins and needles). It can also translate into sharp, jabbing, throbbing, or burning pain and can be spontaneous or triggered by touch or temperature changes. Or, it can be translated into extreme sensitivity to touch (allodynia) where even light touch can cause pain, and can result in loss of sensation where there’s a difficulty feeling pain, temperature changes, or pressure.
MS symptoms can also be incredibly paradoxical. While the role of vitamin D in people with MS is well-known, warm temperatures can cause Uhthoff’s phenomenon, making it inadvisable to sit in the sun to soak up vitamin D. It will require some time to learn what triggers specific symptoms before you eventually know how to treat your body with kindness.
Forgive yourself
I get it. You didn’t ask for this illness. You didn’t load your brain with negative thoughts or substances that caused your neurons’ myelin coating to break down. I am the first in the family with MS; I never smoked or drank alcohol and never did drugs aside from vitamins and healthy food. Yet here I am. And here you are. Neuroscientific research is still trying to find what causes multiple sclerosis. So, free yourself from guilt and accept that what you were saddled with was a flash in the pan. To get the guilt out of my system, I wrote A harsh letter to my MS, because sharing those first few days, weeks, months or even years was cleansing, and it created a new road ahead my mind that made the future seem much easier (the post has been added to and republished certain times to refect a changing mindset).
Accept the help and love from those who mean well
Yours truly has been forced to cancel birthday celebrations; flights abroad; hospital appointments to see the neurologist about the very illness you were diagnosed with; and heck, even more paradoxically, I was unable to pick up a national best blog post award because of the very illness I wrote about.
It is often hard for people without MS to grasp how such unpredictability and adaptability are forced to go hand in hand, no matter how abrupt it is, and how damaging and painful it is physically, mentally, emotionally or professionally.
Twenty years post-diagnosis, I have learned how to balance life and illness, whether through improvised life hacks, plenty of practical coping strategies, or holistic skills, trying to improve my quality of life. However, these skills are not a holy grail set in stone. Some strategies work one day but not the day after. Just like their unpredictability, symptom management can be hit or miss. Taking ownership of your life is, as such, a somewhat Machiavellian fight for control of your life.
Let the outside world deal with its negativity around your illness
After my diagnosis, finding peace amidst an ongoing storm wasn’t easy. First of all, I needed to learn how to recognise how MS would affect my body and, indeed, help those around me understand that, despite how strange triggers and symptoms may seem, they are neither excuses nor a sign of self-pity. If you find that you need to distance yourself from those who refuse to accept that you are not able to do certain things anymore, it’s important to take that step, whether permanently or temporarily. Empower yourself to prioritise your health, regardless of what others may think.
Invisible illnesses are the worst kind because some people want to see validation when others discuss their incurable, neurodegenerative conditions. It’s frustrating, to say the least.
So, implement lifestyle adjustments and coping strategies tailored to your needs and experiences—not those of others.
In the end, your health matters more than fake empathy.
Period.
Share your experiences
One of the mottos of this blog is trying to make sense out of nonsense together and trying to become normal when your life with MS is a beautiful mess. I hope I can still do so, as the MS community is one of resilience, mutual understanding without saying a word, and especially sharing strategies when you need them most.
What I would tell my newly diagnosed self
Girl, your MS cannot be cured, but neither can your indestructible drive to keep going when even the darkest days make it difficult to leave the house. Twenty years ago, you sat in a neurologist’s office in a country you had moved to just 2.5 years prior and you feared you would be confined to a wheelchair in no time. Your multiple sclerosis and trigeminal neuralgia diagnoses could not bring you down, however, and nor could a hospital-acquired superbug that almost took your life. But you not only survived, you thrived. You became someone you never thought you could be. You are still walking, literally, despite chronic nerve pain, and despite excruciating facial nerve pain that is hard to describe-and even harder for others to believe. You have learned how to adapt to MS, allowing yourself to rest and sleep whenever needed. You reached out to others to make sense of this nonsense together, and you became an MS Ireland patient advocate, a writer for other online publishers. You won a national blog award for a post about changing medicines. You gladly contribute to the medical and scientific field, where possible. So, yes, life goes on. Yes, your illness is neurodegenerative, but you are setting your own standards for being the best version of who you can be. And yes, let the next twenty years be a carbon copy of the past.
More info
Optic neuritis, Medline Plus
Multiple Sclerosis, National Institute of Neurological Disorders and Stroke
Trigeminal neuralgia, National Institute of Neurological Disorders and Stroke
Multiple Sclerosis Ireland, Irish National MS Society
2018 Winner Best Blog Post, Ireland Blog Awards by Ashville Media Group, Dublin, Ireland
◾ Everyday Health: Top 10 MS Blogs to Follow in 2023, 2022, 2021, 2020, 2018
◾ 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 & Me, 2011-2025
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One Comment
Katie
My sister has MS and was recently diagnosed with trigeminal neuralgia. It sounds absolutely dreadful. Thank you for the follow! I appreciate your support.