Why I keep a stocked ER box. And it’s not for the reason you think

In the corner of my bedroom, tucked just beneath the window, sits a box I never wanted to need. It is not hidden, but it is not left out in the open either. Inside are clean pyjamas, a hairbrush, a pack of makeup wipes, deodorant, a soft scrunchie and some lip balm. I call it my ER box. It exists for one reason only: so that when I am in unbearable pain — the kind that leaves me unable to stand upright — I can still show up to the hospital looking clean, calm and composed.

This is what disabled people learn to do. Especially those of us with invisible conditions.

I have been living with endometriosis for 15 years. That is 15 years of surgical scars and internal bleeding, and 15 years of unpredictable flare ups and months where I bled every single day. Over time, I learned that being in pain is only half the battle. The other half is convincing someone else that the pain is real.

That is the great dilemma. Not the pain itself, but the performance of it.

And lately, it has been harder not to think about it. News recently broke that over 1500 patients were treated in corridors at Middlemore Hospital in just one month. Staff shortages. Overcrowding. Hospitals stretched thin. When emergency departments are under that much pressure, there is even less space for people like me: the ones who do not look sick in an obvious way. The performance becomes even more important. And even more exhausting.

You do not show up to the emergency room as your true self. You show up as the version of yourself you hope will be believed. Sometimes it feels manipulative, but then the next wave of pain hits and you find that you do not care. You present not just your body, but your case. You present evidence. You smooth your hair. You put on fresh clothes. You wipe the tears from your eyes and try to sit up straight even when every organ in your body is begging you to lie down.

It has nothing to do with vanity. It is about credibility.

To be clear, this is not a narrative about the good nurses. The ones who glance at your chart and your face and your trembling fingers and already know that you are holding it in. The ones who treat you like a person, not a problem. This is not about them.

This is about the others. The ones who need persuading. The ones who scan your body language for inconsistency, and weigh your pain against their expectations of how pain should look. The ones who say things like, "she does not look like she is in a ten out of ten" or "if you were really in that much pain, you would not be able to talk right now".

They do not understand that my ten out of ten looks different. Controlled. Quiet, because if I let it be loud, I might lose control entirely. They do not know how many times I have been told to stop exaggerating, to try a hot water bottle, to go for a walk, to breathe through it, to take a mild anti-inflammatory and rest. So I stopped screaming. I stopped crying.

Because when you are disabled, especially with something invisible, you do not get to just have symptoms. You have a case to make. And I am one of the lucky ones, because the colour of my skin and the health insurance my mum pays for gives me an added layer of privilege that some of my peers do not have.

I have had pain medication refused because I did not look distressed enough. I have been told I was having a panic attack when I was experiencing internal bleeding. I have sat in plastic waiting room chairs, doubled over and silent, watching as people who came in after me were seen before me. Once I heard a nurse say just outside the curtain: "she looks fine to me."

That moment stuck with me.

It is why the ER box stays packed. It is why even at my most vulnerable, I will still try to look presentable. Because I am afraid that if I do not, I will be left to suffer quietly behind that curtain again, while someone decides whether or not I look like someone worth helping.

And I know I am not alone.

Other disabled people, chronically ill people and neurodivergent people all carry their own versions of this box. Sometimes it is a literal bag. Sometimes it is just the stories we memorise to explain our pain in a way that feels acceptable. We adjust our tone, our posture, our expressions. Especially for those whose disabled identity intersects with another minority identity. We learn to say "I have a diagnosis" before we say "I am in pain”. We rehearse what we will say if we are asked to rate it on a scale of one to ten.

There is a deep injustice in all of this. And it runs on the assumption that visible suffering is the only suffering worth treating. That pain has to scream to be real. That if you do not look sick, you must not be.

But we are here. We are real. We are still in pain, even if our hair is brushed and our clothes are clean. But not too clean. Not too well-manicured. It is a fine line to walk. An exhausting one.

The great dilemma is this: to be taken seriously, we have to put on a costume. Not because we want to, but because experience has shown us that the truth on its own is not always enough.

And we deserve better than that.

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