The Humiliation Tax & The Six-Session Shuffle

Chronic illness, NHS limbo and the increasingly expensive business of staying hopeful

Published 20 July 2026

By Antonia @ Unremarkable Me

I wake up most mornings auditioning for a better day.

There is a brief, fragile moment before I move when I imagine that today might be the day my body cooperates. Perhaps my joints will remain in their assigned seats. Perhaps gravity will stop behaving like a personal vendetta. Perhaps my nervous system will glance at the schedule and decide not to stage a coup before breakfast.

Then I shift my neck half a centimetre and my entire body files an HR complaint.

By the time somebody says “GP,” “referral” or “hospital appointment,” my bum clenches so hard you could crack a walnut.

Pavlov had his dogs.

I have the NHS.

Before anyone begins sharpening a ceremonial pitchfork, this is not a roast of individual clinicians. I have met kind, thoughtful and determined healthcare professionals who are trying to hold people together while working inside a system that increasingly resembles a Jenga tower assembled during a minor earthquake.

This is about the pattern.

The conveyor belt.

The referral ricochet.

The six-session shuffle.

I am brilliant in an emergency. Give me chaos and I become luminous. Burst pipe. Bureaucratic meltdown. Family disaster. Child with a Lego head lodged in one nostril. I am calm, strategic and mildly heroic.

Chronic illness is not that.

Chronic illness is siege warfare with a teaspoon.

There are no sirens, medals or dramatic closing credits. There are forms, waiting lists, inaccessible buildings, disputed referrals and the occasional letter explaining that the department you were sent to does not treat the condition for which you were sent.

Then comes the familiar offer:

“We cannot refer you to the specialist you need, but how about six sessions of musculoskeletal physiotherapy?”

Which was extremely useful when I dislocated my knee.

It is rather less comprehensive when we are dealing with Ehlers-Danlos syndrome, postural tachycardia syndrome, Chiari malformation, neurological symptoms, instability, ataxia and whatever surprise feature my connective tissue has decided to premiere this week.

A body with several interacting conditions cannot always be divided neatly between departments. My neck does not stop affecting my nervous system because one clinic only treats necks. My heart rate does not politely wait outside the room while somebody discusses my joints. The human body, inconsiderately, has refused to adopt the NHS departmental structure.

How very uncooperative of it.

Illness Is Expensive. Hope Is Too.

While all this is happening, the cost-of-living crisis hums underneath daily life like a passive-aggressive bassline.

There is the cost of heating the house you cannot safely leave.

The taxi to an appointment because public transport is inaccessible on a bad day.

The parking charge for the privilege of sitting beneath fluorescent lighting for three hours.

Replacement braces. Mobility aids. Prescription charges where applicable. Private letters. Adapted clothing. Electrolyte products. Cooling equipment. Heating equipment. Food that meets medical or sensory needs.

Then there are the invisible costs.

The appointment that is cancelled after transport has already been paid for.

The partner who loses wages to accompany you.

The hours spent gathering evidence, chasing letters, correcting records and explaining the same medical history to a succession of people who each appear to believe they are the first person ever to ask.

Illness does not merely take your health. It charges administration fees.

And when every request for appropriate support requires another battle, hope itself becomes expensive. You begin rationing it. Not because you are negative, but because optimism without protection can leave bruises.

The Humiliation Tax

Then come the forms.

You know the ones.

They ask about pain, washing, dressing, toileting, mobility, food preparation, intimacy, supervision, communication and every small indignity that makes up a difficult day.

You write down things you have never said aloud.

You calculate distances you have never measured.

You quantify your worst moments.

You explain your bowels to a stranger in Arial 11.

You do it because you must. Benefits such as Personal Independence Payment are assessed according to how a condition affects particular daily-living and mobility activities, rather than the diagnosis alone. Official guidance also asks whether activities can be completed safely, repeatedly, to an acceptable standard and within a reasonable time.

That distinction matters enormously for fluctuating conditions.

Being able to complete an activity once, through pain, with a recovery period resembling the aftermath of a small maritime disaster, is not the same as being able to do it reliably.

Knowing the rules does not make the process gentle. It does, however, give you firmer ground beneath your feet.

Citizens Advice provides detailed guidance on completing PIP forms, preparing for assessments and challenging decisions. Turn2us also offers a benefits calculator, grants search and PIP support tools.

Still, let us be honest about the exchange rate.

Too often, the apparent price of support is dignity.

So I built armour.

Not brittle, shiny, “I’m absolutely fine” armour. That type cracks the moment somebody asks a follow-up question.

Strategic armour.

The rule of relevance

I disclose what is relevant to my care, safety, function or application.

Healthcare professionals sometimes need to ask personal questions. Benefits assessors must understand how a condition affects everyday life. That does not mean every conversation must become an unrestricted excavation of your private world.

A useful question to ask is:

“Could you explain how that question relates to the assessment or treatment?”

It is calm, reasonable and puts the purpose of the question back into the room.

Pre-written evidence blocks

I keep short, accurate paragraphs describing recurring difficulties.

One for mobility.

One for personal care.

One for cognitive symptoms.

One for pain and fatigue.

One for what happens after an activity, because the aftermath is often where fluctuating illness hides its sharpest teeth.

This means I am not reopening the same wound from scratch every time a new form arrives.

A pre-written paragraph is not cheating. It is energy conservation with punctuation.

A scripted boundary

“I am happy to answer questions that are relevant to my care or assessment. I have also provided a written summary covering the wider impact.”

A time-out line

“I need a short pause before we continue.”

You do not need to apologise for regulating your body during a medical or benefits assessment.

You are allowed water.

You are allowed notes.

You are allowed to ask for a question to be repeated or explained.

You are allowed to say that the version of you sitting in the room does not represent what you can reliably manage across an ordinary week.

Healthcare, not interrogation.

Control, Influence and Witness

When everything begins to feel like quicksand, I divide the situation into three boxes.

Control

What can I do directly, right now?

My position.

My breathing.

Whether I pause.

Whether I drink something.

The next email.

The next sentence.

The decision not to solve my entire life before lunch.

Influence

What can I shape, even if I cannot guarantee the outcome?

How I describe my symptoms.

The wording of a form.

The evidence I attach.

Who attends an appointment with me.

Who I copy into an email.

Whether I request reasonable adjustments.

Whether I ask for the clinical reasoning behind a decision.

Witness

What can I observe, document or object to, but cannot personally repair today?

National policy.

Staffing shortages.

Backlogs.

Fragmented services.

The architectural decision to create a fourteen-page form that appears to have been designed by someone who has never attempted stairs with unstable joints.

You cannot fix the Witness box on a Tuesday afternoon.

Trying will only result in a Tuesday afternoon that is both broken and angry.

What you can do is steal one thing from Influence and shrink it until it fits inside Control.

You cannot force a referral to be accepted.

You can ask for the reason for refusal in writing.

You cannot rebuild an entire care pathway.

You can prepare a one-page summary.

You cannot personally resolve the national waiting list.

You can ask what support is available while you wait.

That is not surrender.

That is strategy.

The Six-Session Shuffle

Let us return to the musculoskeletal loop.

MSK services are not villains. Physiotherapy can be extremely valuable for people with hypermobility-related conditions when it is individualised, paced appropriately and delivered by somebody who understands instability and the wider condition.

The problem is not physiotherapy itself.

The problem is physiotherapy being used as the universal holding pen for symptoms that require broader investigation, coordination or specialist input.

Ehlers-Danlos Support UK notes that physiotherapy and activity can play important roles in managing hypermobility-related disorders, while also warning that not every physiotherapist is familiar with the complex presentation of EDS.

That distinction is important.

“Have physio” is not a complete care plan.

What type?

For which problem?

With what precautions?

Under whose oversight?

How will progress be measured?

What happens if treatment causes deterioration?

How does this fit alongside the person’s neurological, cardiovascular, autonomic or structural conditions?

When a multisystem presentation is repeatedly returned to the same generic pathway, it can feel like being offered a sticking plaster for a structural fire.

So I try to establish the frame early:

“I have previously completed standard physiotherapy. Because my current presentation involves diagnosed multisystem conditions and neurological symptoms, I am asking for an assessment that considers the interaction between them. I have brought a one-page medical summary, including previous treatment and its outcome.”

Another useful version is:

“Could you record the clinical reasoning for this referral and explain what the service is expected to assess or treat?”

That question does not accuse anyone of wrongdoing. It simply asks the pathway to make sense out loud.

You can also ask:

“If this service is not able to address the wider presentation, what is the appropriate escalation or referral route?”

Polite.

Firm.

Calm enough to be difficult to dismiss.

You are not asking for luxury.

You are asking for care that matches the problem.

Build a One-Page Medical Summary

Complex patients are often expected to deliver a flawless medical monologue while unwell, frightened, in pain and being interrupted every twelve seconds.

I have therefore stopped relying on my brain to become an administrative swan on command.

A one-page summary can include:

Diagnosed conditions:List the conditions most relevant to the appointment.

Current concern:Two or three sentences describing what has changed and why you are seeking help now.

Functional impact:Explain what the symptoms prevent or make unsafe.

Previous treatment:Include what has been tried, whether it helped and whether it caused problems.

Important risks or precautions:For example, known allergies, instability, fainting risk, medication reactions or communication needs.

Current specialists:List the teams already involved.

What you are asking for:Assessment, investigation, symptom management, referral, coordination or written clarification.

The final line is crucial.

Do not make the reader guess what you need.

A Zero-Spoon Reset

When my energy reaches zero, heroics are cancelled.

I am not going to journal my way into transcendence. I am not manifesting a functioning autonomic nervous system. I am not beginning a twelve-stage morning routine led by somebody who wakes naturally at 5.00 am and appears to live inside a beige kitchen.

I am reducing the immediate load.

I settle into the safest comfortable position available to me.

I support the parts of my body that are struggling.

I unclench my jaw.

I let my shoulders drop once.

I breathe in a way that feels comfortable rather than forcing a pattern that makes me dizzy.

I reduce light, noise or conversation where possible.

I take a drink or use whatever symptom-management tools have already been agreed with my healthcare team.

For some people with PoTS, clinicians may recommend changes involving fluids, salt, compression or medication. These measures are not suitable for everybody, particularly people with certain heart, kidney or blood-pressure conditions, so individual medical advice matters. PoTS UK provides detailed patient information and self-management resources that can be discussed with a clinician.

Then I choose one sense and let it dominate for sixty seconds.

A familiar smell.

A textured blanket.

Cool air.

A song I know well enough that it does not demand anything from me.

This is not enlightenment.

This is damage control.

If I can move overwhelm from an eight to a six, decisions may become possible again.

Sometimes the victory is not “I recovered.”

Sometimes it is “I stopped the spiral getting worse.”

That still counts.

Cost of Living, Cost of Hoping

We cannot discuss chronic illness as though it happens in a financial vacuum.

Disabled and chronically ill people may face higher energy use, transport expenses, equipment costs, reduced earning capacity and the endless drip of items that are technically optional only if remaining alive and functional is considered a hobby.

At the same time, NHS elective waiting lists remain measured in the millions. NHS England continues to publish monthly referral-to-treatment data, with the NHS Constitution retaining the right to begin non-emergency consultant-led treatment within 18 weeks unless an exception applies. Actual waits, however, can extend far beyond that standard.

That is not a moral judgement on every person working within the NHS.

It is a structural reality.

When a system is strained, people with complex, fluctuating and poorly coordinated conditions often feel the gaps first.

So hope becomes something you ration.

I no longer demand a better month from myself. That is an aggressive amount of optimism to place on a Tuesday.

I ask for a kinder afternoon.

Sometimes I give the day a theme.

Fortify: Protect energy and prepare.

Float: Do only what is necessary and let the rest drift.

Hibernate: Reduce demands and recover without converting rest into a moral crisis.

The theme becomes a filter.

Anything that does not fit can wait.

It is not glamorous.

It works.

Document the Pattern, Not Only the Crisis

One of the hardest things about fluctuating illness is that healthcare often captures isolated moments.

The ten-minute appointment.

The blood pressure reading while seated.

The brief neurological examination.

The day you happened to manage clean clothes and mascara.

A single moment cannot always explain a repeating pattern.

A basic symptom record can help show:

• what triggers symptoms

• how long they last

• what you cannot do during them

• what happens afterwards

• whether symptoms improve when lying down or resting

• any falls, collapses, dislocations or near misses

• what treatment you tried

• whether it helped

• what support another person had to provide

The record does not need to become a second full-time job.

A few accurate notes are better than an elaborate tracking system you cannot sustain.

The aim is evidence, not self-surveillance.

When You Need to Challenge a Decision

Not every disappointing decision is negligent, and not every refused referral is automatically wrong.

You are still entitled to understand how the decision was reached.

Useful questions include:

“What alternative explanation is being considered for these symptoms?”

“What red flags should prompt urgent reassessment?”

“What support is available while I am waiting?”

“Could you document that I reported this symptom and the reason no further investigation or referral is currently planned?”

“Who is responsible for coordinating the interaction between these conditions?”

“Can I have a copy of the clinic letter and care plan?”

When communicating in writing, include dates, names where known, a clear chronology and the outcome you are seeking.

Try to separate:

1. What happened

2. What impact it had

3. What remains unresolved

4. What action you want taken

This makes it harder for the central issue to disappear beneath a polite paragraph thanking you for your feedback.

For hospital concerns in England, the Patient Advice and Liaison Service can provide information, help resolve some issues informally and explain the complaints process. PALS is not a substitute for emergency care and does not independently investigate every complaint, but it can be a useful point of contact when communication or access has broken down.

If You Are Here Too

If you are trapped in the six-session shuffle, your anger makes sense.

Your exhaustion is rational.

Your frustration is not evidence that you are unreasonable. It may be evidence that you have spent too long trying to make an unreasonable situation function.

Your body is not betraying you.

It is a stubborn, determined ally trying to survive difficult terrain with unreliable equipment and no map.

You are not difficult.

You are navigating something difficult.

Take one thing from Influence and shrink it into Control.

Paste one accurate paragraph instead of writing twelve new ones.

Ask for a pause without apologising.

Bring somebody with you.

Request the decision in writing.

Spend one spoon on something that might return two.

A warm bottle.

A familiar smell.

A quiet room.

A small joy with teeth.

We may not have spectacle.

We still have strategy.

And strategy, my friends, is criminally underrated.

Love,Unremarkable Me

Information and Support

Ehlers-Danlos syndromes and hypermobility

The Ehlers-Danlos Support UKInformation for people with EDS and HSD, including physiotherapy, self-management, healthcare-professional resources and the EDS GP Toolkit.Visit The Ehlers-Danlos Support UK

EDS physiotherapy and self-management resourcesRead the physiotherapy and self-management guidance

EDS GP ToolkitA primary-care resource covering management and indications for onward referral.Open the EDS GP Toolkit

Postural tachycardia syndrome

PoTS UKPatient information, clinical resources, peer support, self-management guidance and a list of clinics with an interest in PoTS.Visit PoTS UK

PoTS UK clinic directoryFind a PoTS clinic

PoTS management informationRead PoTS UK’s management resources

Chiari malformation and syringomyelia

The Ann Conroy TrustUK information and support for people living with Chiari malformation, syringomyelia and associated conditions.Visit The Ann Conroy Trust

Ann Conroy Trust helplineThe charity publishes its current opening hours and contact number on its helpline page.View current helpline details

UK specialist informationView the Ann Conroy Trust specialist resource

Benefits and financial support

Citizens Advice: Personal Independence PaymentGuidance on claiming PIP, completing the form, preparing for an assessment and challenging a decision.Read the Citizens Advice PIP guidance

Citizens Advice: Work Capability Assessment formsRead the Universal Credit work capability form guidance

Turn2usFree benefits calculator, charitable-grants search, PIP tools and cost-of-living information.Visit Turn2us

Turn2us Grants SearchSearch for charitable grants

Official government PIP informationRead the GOV.UK PIP claim guidance

NHS concerns, communication and complaints

NHS Patient Advice and Liaison ServiceInformation about what PALS can do and how to find the service connected to your local NHS organisation.Read the NHS PALS guidance

Find a local PALS serviceUse the NHS PALS search

NHS England complaints informationRead the NHS feedback and complaints guidance

NHS waiting-time information

NHS England referral-to-treatment statisticsOfficial monthly information about consultant-led elective waiting times in England.View NHS referral-to-treatment statistics

NHS England waiting-times dashboard Open the public RTT dashboard

Disclaimer

This article reflects personal lived experience and is intended for general information and peer support. It is not medical, legal or benefits advice.

Do not make significant changes to medication, fluid intake, salt intake, compression, physical activity or symptom-management routines without appropriate individual advice, particularly if you have heart, kidney, blood-pressure or other conditions that could make such changes unsafe.

Seek urgent medical help for new or severe symptoms, including sudden weakness, new difficulty speaking, severe breathing difficulty, loss of consciousness, a sudden unusually severe headache or any symptom you believe may be an emergency. In the UK, call 999 for an emergency or use NHS 111 when you need urgent medical advice but it is not a life-threatening emergency.

Information, services and eligibility rules can change. Check the linked organisation’s website for its most recent guidance.

Love Unremarkable Me.