04/06/2026
Leaving the “baby” aside for this post.. 🙌
June is Migraine Awareness month and there is something I've wanted to say for a long time about chronic migraine, chronic illness and invisible disability.
I don’t suffer from chronic migraine, but my wife does.
Most people think they understand migraine.
They picture someone lying in a dark room for a few hours with a bad headache before getting back to normal the next day.
For some people, that's their experience.
For many others, it isn't.
For some people, migraine is not an occasional event.
It becomes a way of life.
It becomes something that influences every decision, every plan, every day and every future goal.
What many people don't understand is that chronic migraine isn't just about the headache itself.
It's about the exhaustion that comes with living in a body that rarely feels well.
It's waking up already feeling unwell.
It's never knowing whether a family gathering, a day out, a shopping trip, a meal with friends or a work commitment will be manageable.
It's calculating the consequences of everything you do.
It's constantly weighing up whether something is worth the inevitable increase in symptoms afterwards.
It's living with pain so often that you forget what normal feels like.
One of the biggest misconceptions about chronic illness is that people assume if you're not in bed, you're fine.
If you're dressed, smiling, attending events, working some hours, posting on social media or having a conversation, then clearly things can't be that bad.
The reality is that many people with chronic illness become experts at functioning whilst unwell.
They don't attend a family event because they feel good. They attend despite feeling awful.
They don't go to work because they're symptom-free. They go because bills still need paying and responsibilities still exist.
They don't leave the house because they're better. They leave because life doesn't stop simply because they're suffering.
Many people with chronic illness spend years functioning through pain levels that would make a healthy person stay at home.
The problem is that because they keep showing up, people stop recognising the cost.
Nobody sees the recovery afterwards.
Nobody sees the hours spent lying in a dark room.
Nobody sees the worsening symptoms.
Nobody sees the nights of poor sleep.
Nobody sees the tears, frustration or fear that happen behind closed doors.
People only see the brief moment that person appeared okay.
One of the hardest parts of living with a chronic condition isn't always the physical symptoms.
Sometimes it's feeling misunderstood.
It's being told you need to push yourself more when you've spent years doing exactly that.
It's being told to exercise more, relax more, get out more, drink less, drink more, try harder, think differently, worry less or stop focusing on your health.
It's hearing well-meaning advice from people who don't realise you've already spent years trying everything you can think of.
It's being viewed as someone who is always ill rather than someone who is fighting every day to maintain some quality of life.
It's watching people rally around others during short-term illnesses whilst your long-term struggle becomes background noise.
It's hearing concern for someone with a temporary headache whilst your years of pain are quietly accepted as normal.
It's hearing people say "you don't look ill" when you would give absolutely anything not to be.
The truth is that nobody chooses this life.
Nobody chooses hospital appointments.
Nobody chooses medications and side effects.
Nobody chooses scans, referrals, waiting lists and uncertainty.
Nobody chooses to watch opportunities disappear because their body won't cooperate.
Nobody chooses to lose parts of their career, independence, confidence or future plans.
Nobody chooses to spend years searching for answers.
Most people with chronic illness would trade all of that in a heartbeat for a healthy body and an ordinary life.
What many people living with chronic illness need most isn't advice.
It's not another suggestion.
It's not another miracle cure they should try.
It's understanding.
It's someone asking, "How are you really doing?"
It's someone acknowledging how hard they're fighting.
It's someone recognising that just because a person is functioning doesn't mean they aren't struggling.
It's someone understanding that strength often looks very different to what people expect.
Sometimes strength looks like getting out of bed despite feeling awful.
Sometimes strength looks like attending an event knowing you'll pay for it later.
Sometimes strength looks like trying another treatment after years of disappointment.
Sometimes strength looks like simply surviving another difficult day.
So if you know someone living with chronic migraine, chronic pain, fatigue, an invisible illness or a long-term health condition, please remember this:
You are only seeing a small part of their experience.
You don't see every symptom.
You don't see every difficult moment.
You don't see every sacrifice.
You don't see every fear.
You don't see every battle.
But that doesn't mean they aren't there.
The next time someone tells you they're struggling, resist the urge to fix them.
Resist the urge to compare.
Resist the urge to explain why they'll probably be fine.
Instead, listen. Believe them.
And remember that sometimes the kindest thing you can do is simply acknowledge that what they're carrying is real.
Because feeling understood won't cure chronic illness.
But feeling misunderstood can make an already difficult life feel much lonelier than it needs to be.
