At 1am in an emergency room, brought in by ambulance with a suspected heart attack, a nurse glanced at my chart and dismissed my pain with four words.
‘You look just fine.’
I’m sitting in a wheelchair in the Regional Hospital Emergency Room. It’s May 2025. My blood pressure is dangerously high. I have crushing pain in my chest, pins and needles shooting down my left arm, and I’ve been struggling to breathe properly for hours before finally calling for help.
But because my ECG doesn’t immediately show a heart attack, I’m left waiting.
Seven hours in a wheelchair. Not even a trolley available.
Every part of my body is aching, while a sharp pain grips my chest so tightly I genuinely wonder whether people are simply waiting for someone to collapse before being seen.
The nurse doesn’t mean to hurt me when she says those words. She’s busy. I look composed enough. But what she cannot see is the sheer effort it takes to stay upright.
The breathwork.
The mindfulness.
The constant internal dialogue trying to stop my nervous system from spiralling.
What she cannot see is that for the past seven years, I have lived with Trigeminal Neuralgia (TN) – often called ‘the suicide disease’ because the pain is considered one of the most severe known to medicine.
Michele Roys has lived with the disease Trigeminal Neuralgia for seven years
Imagine electric shocks exploding through your face while it simultaneously feels like someone is cutting it open with a knife.
Burning.
Lightning shocks.
Stabbing pain.
Sometimes more than 50 or 100 attacks a day.
There are moments where I can be mid-conversation and suddenly have to stop speaking completely. I gently place my hand against my face and focus on breathing while trying not to panic. Often, my children can only hear me moaning through the pain while I hum or vibrate my voice, trying to calm my vagus nerve enough for the attack to pass.
The nerve affected by TN
And because none of this is visible from the outside, people assume you’re fine.
Eventually, after further testing, I’m diagnosed with costochondritis – inflammation in the cartilage connecting my ribs to my sternum, a condition that can mimic a heart attack almost perfectly.
Another painful, invisible condition to add to the list.
Alongside TN, I also live with fibromyalgia and chronic Lyme disease. I am a pot full of issues. But the reality is that chronic illness slowly changes every area of your life.
What people don’t understand is that you are not faking illness.
You are faking wellness.
You smile.
You push through.
You try not to talk about the pain too much because you don’t want to become ‘the sick person’ nobody wants to be around.
Before all of this, I had a twenty-year career in global leadership roles across ten countries and four continents.
I was constantly travelling, juggling projects, pushing myself, always saying yes to one more thing.
Then my body said no.
Abruptly, without an invitation, it just took over.
As the years passed and the pain spread throughout my body, I slowly realised the old version of me was not coming back.
That grief is hard to explain unless you’ve lived it.
You mourn your spontaneity.
Your independence.
Your energy.
I miss being able to go on a hike without calculating the recovery cost afterwards. I miss saying yes to dinner with friends without wondering whether it will take me two days or two weeks to recover.
I miss not having to mentally measure every outing against the amount of energy left in my body.
At one point, even brushing my teeth or washing my hair became difficult. Talking could trigger attacks. Wind against my face could trigger attacks. Eating could trigger attacks.
In the beginning, I isolated myself badly because I never knew when the next shock would come.
And yet somehow, people would still say: ‘But you look great’.
There’s also a strange humiliation that comes with invisible illness.
Using a mobility scooter on family days out so I can preserve enough energy to actually stay present with my children. Requesting airport assistance while looking ‘healthy’. Watching people silently judge you because your disability doesn’t look the way they expect it to.
That kind of judgment chips away at you.
There was a point in those early years where I truly understood why TN is called the suicide disease. I remember lying there wondering if this was how the rest of my life would feel.
What pulled me through was my faith, my family, and my two boys.
Slowly, I started rebuilding my life through tiny steps.
Making my bed became an achievement. I would make one side, lie down to rest, then make the other. Afterwards, I would lie on top of the finished bed and think: at least I managed something today.
It sounds ridiculous until your body stops cooperating with you.
Those tiny wins became survival.
That experience eventually led me to write my book, But You Look Just Fine: My Journey to Rediscover Joy Amidst Chronic Pain and Invisible Illness, which recently won the International Impact Book Award for Health and Chronic Pain.
I didn’t write it because I had everything figured out. I wrote it because I wanted people living with invisible illness to feel less alone.
Around 35 per cent of people in Ireland live with chronic illnesses
In Ireland, around 35 per cent of people live with chronic illness, many of them invisible.
Which means that every day, people are walking around carrying pain you cannot see.
The colleague smiling through exhaustion.
The mother pretending she’s okay.
The person forcing themselves through another workday while silently counting the minutes until they can lie down again.
We never truly know what someone is carrying.
And sometimes, the people who ‘look fine’ are fighting the hardest battles of all.
To you, dear reader – remember you are not alone. Your circumstances do not define you. You are worthy of love, joy and health. Keep believing, and find your joy in the storms you are facing. Small, tiny steps forward.
I believe in you.
Love,
Michele Roys
