Welcome to Wait.. I’m Disabled?!

If you’ve ever heard someone say, “But you looked fine the other day,” you’re not alone.

It’s one of the most common misconceptions surrounding disability and chronic illness. Many conditions don’t look the same from one day to the next, and for millions of people, symptoms fluctuate constantly.

A person can appear energetic one day and struggle to get out of bed the next. Neither version is more “real” than the other.

Disability isn’t always visible, and even when it is, appearances can be misleading. Many people live with conditions that fluctuate from hour to hour or day to day.

Pain levels change..

Fatigue comes and goes..

Mobility can vary..

And symptoms often depend on countless factors such as stress, sleep, weather, infections or simply how the body decides to behave that day.

Living with a fluctuating condition often means learning to adapt rather than expecting consistency!!

One of the biggest challenges isn’t always the symptoms themselves..

It’s the assumptions people make. Society often expects disability to be obvious, permanent and predictable.

If someone sees you smiling..

Attending an event or even..

Walking a short distance..

They may assume you’re recovering or that your disability can’t be that serious!!

The reality is often far more complicated.

Many disabled people carefully choose where to spend their limited energy. They may save it for birthdays, family gatherings, holidays or special occasions.

What others see is often just a small snapshot of someone’s life rather than the hours, days or even weeks of recovery that may follow.

Looking well for a few hours doesn’t necessarily mean someone feels well, and it certainly doesn’t erase everything happening behind the scenes.

I often get asked whether I’m better now, or if I’m okay.

The honest answer is that I won’t “get better” in the way many people hope or expect.

Instead..

I try to be as well as I can be each day.

Every morning feels a bit like spinning a roulette wheel..

Which symptom is going to be loudest today?

Which one has decided it’s staying for a three-day rave?

Which one simply refuses to sit still?

Living with chronic illness can sometimes feel like raising a particularly stubborn toddler!!

Some days everything behaves itself.

Other days nothing does.

A strategy that helped yesterday might make things worse today.

One day can feel overwhelming, while the next almost feels normal.

There isn’t a single version of my disability because there isn’t a single version of my body. No two days are ever the same.. unless I’m asleep, and even then who knows what my body’s getting up to!

The hardest part isn’t always managing my symptoms..

It’s knowing that many people only ever see snippets of my life.

They see me at birthdays, Christmas, family days out or other planned occasions. They don’t see the preparation beforehand or the recovery afterwards.

Those are the moments when I, like so many other disabled people..

Put on a smile,

Mask how I’m really feeling and do everything I can to be present!!

It’s not about pretending to be ill.. It’s about pretending to be okay!!

Not because I want sympathy or attention, but because I don’t want to miss out.

I want those memories to belong to me too.

I want to laugh with my family, celebrate milestones and experience life’s special moments, even if I know there’ll be a price to pay afterwards. Sometimes the effort is worth it. Sometimes it’s incredibly hard!!

For me, another challenge is the constant explaining.

The questions often come from a place of kindness, but there are days when I simply don’t have the energy to educate everyone I meet.

Disability isn’t one size fits all!!

Two people can have the same diagnosis and experience it completely differently. We may share a condition, or even some of the same symptoms, but the severity, triggers, treatments and ways we cope can all vary enormously.

Every disabled person’s story is unique.

Perhaps that’s why it’s so important not to judge someone’s health based on a single moment..

The person you saw laughing yesterday may have spent today recovering.

The person who looked confident might have been masking unbearable pain.

The person who smiled for a photograph may have gone home and collapsed into bed afterwards.

So the next time you see someone who “looks fine”, remember that you may simply be seeing them on one of their better days..

Or perhaps you’re seeing the incredible effort they’ve put into making it look that way.

A little understanding, patience and kindness can go much further than assumptions ever will!!

We never truly know what another person is carrying. Sometimes the strongest thing someone does all day is make it through with a smile.

Looking beyond appearances and recognising that disability can be invisible, fluctuating and deeply personal helps create a world where people feel believed rather than judged..

And that’s something we can all be part of!!

Rae Rae

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