Understanding Disability Fluctuations

Why One Size Doesn’t Fit All

No two disabled people are the same, and no two days are alike—yet current disability assessments fail to recognise this vital reality. Understanding Disability Fluctuations and the Need for Reform in PIP Assessments

1. The Unseen Reality of Fluctuating Conditions

Living with a disability is not always a fixed or consistent experience. For many people, symptoms and limitations can change drastically from day to day—or even hour to hour. Conditions such as Multiple Sclerosis, Fibromyalgia, Chronic Fatigue Syndrome (ME/CFS), and mental health disorders often follow unpredictable patterns, making it nearly impossible to generalise someone’s abilities based on a single moment in time.

Unfortunately, the systems designed to support disabled individuals—particularly the Personal Independence Payment (PIP) assessment in the UK—often fail to account for this reality. Instead, they rely on static, oversimplified criteria that risk misrepresenting someone’s actual day-to-day challenges.

2. No Two People Are the Same

Disability is a deeply personal and individual experience. Even among people diagnosed with the same condition, symptoms can manifest in vastly different ways. One person with arthritis may experience sharp pain in the morning and find relief in the afternoon, while another may endure constant, unrelenting discomfort.

This diversity is what makes standardised assessments like PIP problematic. When assessors apply a rigid framework, they overlook how nuanced and varied each individual’s condition is. People are forced to fit into boxes that don’t match their lived reality—and are then judged based on how well they perform within those confines.

3. PIP Assessments: A System in Need of Reform

Currently, PIP assessments are structured around descriptors and a points-based system. Claimants are asked how well they can perform daily activities such as cooking, bathing, and travelling. But these questions often assume a consistency of function that simply does not exist for many disabled individuals.

For those with fluctuating conditions, being able to complete a task “sometimes” does not mean they can do it “reliably, repeatedly, safely and in a timely manner,” as per the DWP’s own guidance. Yet this nuance is frequently ignored in assessments. Many report being judged based on their “best” day or a brief snapshot in time—leading to unfair decisions and, often, distressing appeals.

4. How Should the System Change?

To reflect the reality of fluctuating disabilities, the PIP assessment process needs to be reformed in several key ways:

Better Training for Assessors: Healthcare professionals conducting assessments must be trained to understand the nature of fluctuating conditions and avoid snap judgments based on a single interaction.
Emphasis on Patterns, Not Snapshots: Rather than asking what someone can do “today,” assessments should examine a pattern of function over time. Claimants should be encouraged to describe the frequency and severity of both good and bad days.
Use of Symptom Diaries: People should be able to submit symptom logs or daily journals as evidence. This would allow decision-makers to gain a fuller picture of how a condition truly impacts someone’s life.
Reform the Points System: The points-based criteria should reflect the variability and unpredictability of fluctuating conditions and incorporate the concepts of reliability, repetition, and safety into each descriptor.

5. Listening to Disabled Voices

Perhaps the most important reform is the simplest: listen to disabled people. Their insights and experiences are the most reliable source of truth about what it’s like to live with a fluctuating condition. Decision-makers must stop treating assessments as tick-box exercises and start treating them as opportunities to understand people’s lives in full.

Only by embracing flexibility and empathy can we begin to build a system that truly supports the diverse realities of disability.

Reasons Why Disability Symptoms Fluctuate

Disabilities don’t exist in a vacuum. There are countless external and internal factors that can trigger changes in symptoms and functionality. This is especially true for those living with neurological, autoimmune, or musculoskeletal conditions, where symptoms are inherently unpredictable.

One of the most common—but often overlooked—factors is the weather.

For example, individuals with Multiple Sclerosis (MS) often find that heat and humidity make their symptoms worse. A warm day might leave someone utterly drained, struggling with blurred vision, fatigue, and muscle weakness that wouldn’t be as intense in cooler conditions. This phenomenon, known as Uhthoff’s phenomenon, is well-documented, yet rarely considered during benefits assessments.

On the other hand, people with Rheumatoid Arthritis and similar inflammatory joint conditions frequently suffer during cold spells. Low temperatures can stiffen joints, increase pain, and drastically reduce mobility. What might seem like a minor seasonal inconvenience to others can leave someone with a chronic condition unable to perform basic daily tasks.

This leads to a bigger issue—fuel poverty and eligibility for winter fuel support. Currently, Winter Fuel Payments are typically reserved for pensioners. But why should support stop there? Disabled people—of all ages—also need consistent heating to manage their symptoms and protect their health.

Whether it’s cooling the environment during a summer heatwave or keeping warm in winter to prevent flare-ups, energy is not a luxury for disabled people—it’s a necessity. It’s time policies reflect that reality.

Disabled lives matter. Comfort, health, and dignity shouldn’t be based on age brackets. Support should be about need.

Conclusion: It’s Time for Change

The current PIP assessment system falls short for those with fluctuating conditions, often leaving them misjudged and unsupported. No two people are the same, and no two days are the same—yet the system still insists on static definitions of disability. Reform is not just necessary; it is long overdue. We must create a benefits system that recognises complexity, validates individual experience, and delivers the support people truly need.