A 42-year-old woman with multiple health conditions says she has delayed applying for Personal Independence Payment (PIP) because she fears being judged or reported by people who misunderstand how disability works.
Maddy Alexander-Grout, from Southampton, says she worries that receiving disability support could make her a target for criticism if people see her spending money on everyday activities such as takeaways, beauty treatments or holidays.
She uses a wheelchair because of health problems including hypermobile Ehlers-Danlos syndrome and says severe pain can make walking or standing difficult. At the same time, she continues to work as a disability advocate and ADHD coach.
Her experience highlights a broader issue faced by some disabled people: the assumption that receiving disability benefits means someone cannot work, socialise or spend money on things they enjoy.
Health
Maddy says she has lived with disabilities since childhood, while an autoimmune condition was diagnosed in 2022. She says her health has deteriorated significantly over the past year.
She is an ambulatory wheelchair user, meaning she uses a wheelchair regularly but can sometimes walk with a stick.
That can create a complicated experience in public. Someone may see her standing or walking and assume that she does not need mobility support, even though she says she remains in pain and cannot reliably walk or stand for extended periods.
Disability does not always have a consistent appearance. A person’s ability to walk for a short distance, for example, does not necessarily indicate how they manage the rest of the day.
Expenses
Maddy says the cost of managing her conditions has become increasingly difficult.
After an accident in May, she bought a wheelchair for about £2,000. She says additional mobility equipment, including spare batteries, brought the overall cost to roughly £3,000.
She also says she spends around £450 each month on medication, treatment for Ehlers-Danlos syndrome and therapy associated with her other conditions.
Additional household costs can arise from disability as well. Maddy says she has to spend more on heating and cooling her home to manage her symptoms.
Travel is another expense. She sometimes relies on taxis, including for work meetings in London, because she says the Underground is not consistently accessible for her needs.
These are the types of additional costs that disability benefits such as PIP are intended to help with, subject to the eligibility rules.
PIP
Personal Independence Payment is a UK benefit designed to help eligible people with the extra costs associated with a long-term physical or mental health condition or disability.
Eligibility is not simply determined by whether someone works or whether they have a particular medical diagnosis. The assessment considers how a person’s condition affects their ability to carry out specified daily living and mobility activities.
That distinction is important in Maddy’s case.
She continues to work and says she earns enough to pay her bills, but she argues that much of her income is being used to cover costs associated with her disability.
Her concern is therefore not simply about receiving additional income. She says PIP could help offset expenses that arise because ordinary activities and travel can cost her more than they would for a non-disabled person.
Fear
Maddy says online criticism has contributed to her reluctance to apply.
She describes being called a “benefits scrounger” by people who tell her to return to work, despite the fact that she already works.
She says she worries that receiving PIP could lead strangers to scrutinise her lifestyle and question whether she genuinely needs support.
Her concern extends to ordinary activities. She says she fears people could interpret going to a festival, getting her nails done or ordering a takeaway as evidence that she does not need disability support.
But spending money on leisure does not, by itself, establish whether someone meets the eligibility criteria for PIP.
Working
Maddy says she has worked since she was 14 and continues to work despite her health conditions.
She says her disabilities make conventional employment difficult. On many days, she cannot walk or stand for long periods, while she also says she can no longer sit at a desk for eight hours continuously.
Working from home or online provides greater flexibility, but it does not eliminate the additional costs associated with disability.
This is an important distinction in discussions about disability benefits. A person can have a job while still experiencing substantial limitations in daily life or mobility.
Stigma
The fear of being judged can become another barrier to seeking support.
Maddy describes not claiming PIP as a form of protection against people who might use her benefit status to criticise her. She says the application process itself also feels exhausting and dehumanising.
For someone already managing pain, medical appointments and daily limitations, completing a lengthy benefits application can represent another significant demand.
Her comments also illustrate why appearances can be misleading. A person with a visible disability may still have abilities that vary from day to day. Someone who uses a wheelchair may be able to stand briefly, walk a short distance or participate in social activities without being able to function in the same way throughout the day.
Independence
Maddy says the purpose of receiving disability support should not be interpreted as giving up ordinary parts of life.
She says she would continue attending concerts and festivals, getting beauty treatments, ordering takeaway food when she cannot cook and dancing when her body allows it.
Her argument is that disability support should help people manage the additional costs and challenges created by their conditions, rather than requiring them to avoid activities simply to appear disabled enough to other people.
For Maddy, the central issue is independence. She says PIP could potentially allow more of her earnings to remain available for ordinary living expenses instead of being consumed by disability-related costs.
Support
Maddy’s experience illustrates the difference between having a disability and being unable to work or enjoy everyday life.
PIP eligibility is based on how a qualifying health condition or disability affects specific activities and mobility, rather than a requirement to give up employment or leisure activities. People who believe they may qualify can use official government guidance to understand the criteria and application process.
The GOV.UK PIP guidance explains who can claim and how the benefit works. The Department for Work and Pensions provides information about disability and benefit policy.
Maddy has not said that she has decided to apply. For now, she says the financial costs of living with her conditions continue to weigh heavily, while concerns about stigma and the application process remain significant barriers.
Her story also raises a broader question about how disability is understood: needing support does not necessarily mean a person cannot work, travel, socialise or spend money on something enjoyable.
