Not the Patient, Not Okay

Published 9 May 2026

By Antonia @Unremarkable Me

There is a particular kind of dread that arrives when someone you love says, “It’s not that bad.”

Especially when that someone is Sam.

Sam could, hypothetically, crack his head open on the bath, leave a small forensic trail from the bathroom to the bedroom, and still announce, with the weary confidence of a man refusing all available evidence, “I’m fine.”

He is not always fine.

He is, however, very committed to the brand.

So when he fell up the stairs after Christmas and ended up with what looked like a carpet burn on the top of his left foot, we did what many long-term couples do when something worrying happens but life has already emptied its pockets onto the floor.

We joked about it.

Not because it was funny, exactly. More because humour is sometimes the only emotional tool left in the drawer that is not covered in rust.

Sam (Love of my Life) has type one diabetes. He has had it since he was eighteen, after a virus killed his pancreas. Not because he “ate badly.” Not because he “didn’t look after himself.” Not because he failed some imaginary moral test involving biscuits.

His pancreas was taken out by illness, looked around, said “not my problem anymore,” and left him with a lifelong medical condition that requires constant management.

That distinction matters.

Type one and type two diabetes are not the same thing, and treating them as interchangeable is not just annoying, it can be dangerous. Type one diabetes means the body cannot make insulin, so insulin is essential. Guidance for inpatient diabetes care is very clear that insulin should not be stopped in patients with type one diabetes because missed insulin can lead to diabetic ketoacidosis, a serious and potentially life-threatening complication.

But I am getting ahead of myself.

At first, the foot looked small.

A nasty mark. A sore patch. Something to clean, dress, watch, and side-eye with the quiet suspicion of someone who has lived with chronic illness long enough to know that “probably fine” is often where the plot twist keeps its knives.

The virus we had both caught after Christmas had taken weeks to leave. It did that deeply irritating thing where it seemed to improve, then circled back like a cold-call salesman with phlegm. I flared afterwards, because apparently my body likes to commemorate respiratory infections with a limited-edition collapse.

But then, slowly, I started recovering.

Not healed. Let’s not get carried away and alert the optimism police. But better.

I was drinking water like it was my job. Resting more. Eating better and more often. Not pushing quite so hard. Making the sensible choices chronically ill people are always told to make by people who have never had to negotiate with their joints before unloading a dishwasher.

And, annoyingly, it was working.

For a moment, I thought I had cracked it.

Then Sam’s foot started looking less like a carpet burn and more like something that had taken a wrong turn into medical textbook territory.

With diabetes, foot problems need attention quickly. Diabetes UK warns that even minor foot problems, such as a blister or cut, can become infected and lead to serious complications, including foot ulcers and, in severe cases, amputation. They advise seeking help straight away if there is a new cut, blister, change, or concern.

So off he went to A&E on a Wednesday morning.

And I will be honest, at first I was relieved.

Not relaxed. Not skipping through a meadow with cartoon birds. But relieved.

Because Sam downplays things. He is the human equivalent of a warning light covered with masking tape. Getting him properly assessed felt like the sensible thing. The safe thing. The “thank goodness, someone with a badge and access to antibiotics can now take over” thing.

He arrived at A&E around 11:30 in the morning.

Blood tests. Foot cleaning. Dressing. Assessment.

Then he was told they were keeping him in and he would be moved to the diabetic ward once a bed became available.

Fine.

Good.

A plan.

A plan is a beautiful thing in a crisis. It is a small fence around the chaos. It says, “Stand here. Wait here. Something is happening.”

By 8pm, he was still waiting.

Tired. In pain. Frustrated. But still waiting.

We both thought it would not be much longer. He had been there for hours. Surely a bed would come up soon. Surely the system had registered that a man with type one diabetes and a worsening foot ulcer should not spend the night in limbo.

Reader, please enjoy the hollow laugh of hindsight.

The next morning, I woke up to a message from Sam.

He was fuming.

Still no bed.

Still in the assessment area.

Still waiting.

And now asking me to bring insulin because he was being told they did not have the insulin he had been using for years.

At first, I tried to rationalise it.

Maybe he was exhausted.

Maybe something had been misunderstood.

Maybe there was another insulin they could safely switch him to.

Maybe the hospital, a building famous for containing medicine, had not actually misplaced the concept of medicine.

Because the alternative was too frightening.

The alternative was that Sam was in hospital, under care, on a diabetic pathway, and still did not have reliable access to the insulin his body depends on.

Which is the sort of thing that makes your trust quietly leave the room.

I got a taxi less than two miles down the road.

It cost £28, because apparently the meter had decided we were travelling via Narnia.

When I arrived, Sam had been in that assessment unit for around thirty-five hours.

Thirty-five hours.

Sat in a chair.

Not tucked into a bed.

Not resting with his foot properly elevated.

Not sleeping in any meaningful human sense.

A chair.

Rows and rows of chairs.

The kind of place designed for temporary waiting, not a full overnight stay with pain, infection risk, type one diabetes, and a foot wound that was clearly not auditioning for “minor inconvenience of the week.”

He was in agony.

I went to speak to the nurse and asked her to come over and see him. She seemed surprised that paracetamol was not touching the pain from the hole in his foot.

Which is one of those moments where your soul briefly leaves your body, looks back at the scene, and says, “I beg your pardon?”

Paracetamol has its place. I am not anti-paracetamol. Paracetamol has helped many of us through headaches, fevers, and the physical consequences of sleeping in a position best described as “collapsed garden furniture.”

But there are times when paracetamol is not pain relief so much as a polite suggestion.

This was one of those times.

I asked for appropriate pain relief.

And then came the insulin conversation.

I was told the NHS no longer used the insulin Sam had been on for the last ten years.

No proper explanation.No calm transition plan.No meaningful answer to the obvious question of where that left him.

Just a statement, dropped into the room like a damp brick.

Luckily, we had some at home.

Luckily.

There are words that should not be doing that much heavy lifting in hospital care.

Luckily, I could bring insulin.

Luckily, I could get there.Luckily, he had messaged me.

Luckily, he was still able to advocate for himself.

Luckily, I knew enough to be alarmed.

But care should not depend on luck and a partner with a taxi receipt that looks like a ransom note.

This is not just a personal anxiety of ours either. In March 2026, the Health Services Safety Investigations Body reported persistent and serious risks around insulin safety for hospital patients with diabetes, including problems when insulin is delayed, omitted, or incorrectly managed.

And that is the maddening thing.

Patients with diabetes are often expected to be expert enough to manage a complex condition every day at home, then suddenly, in hospital, they can be treated as if their own knowledge is optional background noise.

Sam knows his diabetes.

He has lived with it longer than he lived without it.

He knows what insulin he takes.

He knows what happens when his blood sugars are wrong.

He knows how quickly things can turn.

But instead of feeling like that knowledge was being welcomed, it felt like we had entered a strange medical escape room where the clues were scattered across departments and everyone had a different version of the rules.

By that point, he was exhausted.

Sleep-deprived. In pain. Fed up. Scared, though he would probably have called it “annoyed” because men do enjoy hiding terror inside admin language.

He wanted to leave.

And I understood why.

Not because leaving would have been safe. It would not. But because staying had started to feel unsafe in a different way.

There is a kind of psychological claustrophobia that comes from being trapped in a place that is supposed to help you, while also having to fight for basics.

A bed.

Insulin.

Pain relief.Information.

These are not luxuries.

This is not a spa package.

Nobody was asking for cucumber water and a robe. We were asking for the essential components of care for a man with type one diabetes, a deteriorating foot ulcer, and enough pain to make his whole body tighten around it.

It took a lot of talking to keep him there.

A lot of convincing.

A lot of “I know, but please stay.

”A lot of trying to stay calm while every part of me wanted to drag the whole system into a side room and ask whether it had considered getting its life together.

Eventually, around 11pm, he was told a bed had become available on the diabetic ward.

He would be moved soon.

Soon, of course, is a flexible word in hospital.

It was gone midnight before he finally got to lie down and sleep.

After more than a day and a half, In a chair.

With a serious foot wound.

And here is where people often misunderstand the emotional timeline of a crisis.

They think the fear starts when someone says “surgery” or “infection” or “possible amputation.”

And yes, those moments are terrifying.

But sometimes the fear starts earlier.

It starts when the place you were relying on to be safe gives you your first reason not to trust it.

It starts when the person you love messages from a hospital chair after a night without sleep.

It starts when insulin becomes something you have to bring from home.

It starts when pain is treated as if it is being a bit dramatic.

It starts when you realise that admission does not mean you can stand down.

That was the first alarm bell for me.

The moment I understood that I could not simply hand the crisis over.

I would still have to watch.

Still have to ask.

Still have to check.

Still have to translate.

Still have to hold the thread.

And because I already had my own hospital trauma sitting in the back of my mind like a Victorian ghost with a clipboard, that realisation did something to me.

It put me back on alert.

Not the useful kind of alert, where you remember keys and appointments.

The animal kind.

The deer-in-headlights kind.

The kind where your body says, “Do not relax. Do not trust the quiet. Do not assume the adults have this.”

Which is inconvenient, because I am technically an adult.

Rude, really.

The following day, when doctors started seeing him properly and treatment began to move in the right direction, part of me was relieved.

But another part of me had already changed.

I had seen the gap.

The gap between being admitted and being cared for.

The gap between a plan and communication.

The gap between “hospital” as a concept and hospital as a place full of tired staff, broken systems, missing information, and patients trying to remain human under fluorescent lights.

And once you have seen that gap, you do not unsee it.

This is where the crisis truly began.

Not with the surgery.

Not with the maggots.

Not with the vacuum pump.

It began with a chair.

A missing bed.

A conversation about insulin that made no sense.

And the awful knowledge that the person I loved was in the right place, but I still could not fully breathe.

For anyone reading this who is supporting someone in hospital, especially someone with a complex or long-term condition, I wish I had a neat little checklist that would make it all easier.

I do not.

But I do know this.

Write things down.

Ask who is leading care.

Ask what the plan is for today, not just “the plan” in the mystical abstract.

Ask what medication has been given and when.If something feels wrong, say it clearly.If pain is not controlled, say that clearly too.If the patient has type one diabetes, make sure staff understand that insulin is essential, not optional.And if communication breaks down, ask about PALS. The NHS Patient Advice and Liaison Service offers confidential advice, support, and information for patients, families, and carers, and can help when there are concerns about hospital care.

Also, if you are the person sitting beside the bed, please remember that you are part of this story too.

Your fear counts.Your exhaustion counts.Your confusion counts.Your anger counts.

You may not be the patient.

But that does not mean you are okay.

Love Unremarkable Me.