The Realities of Being ‘on Disability’

For ten years after my schizophrenia diagnosis, I remained in the workforce. Part of the reason was that several health complications prevented me from staying on maintenance therapy. Following my first psychotic episode, I spent a year taking quetiapine before developing neuroleptic malignant syndrome. The same thing happened when I was switched to aripiprazole. After two dangerous reactions, my community psychiatrist suggested coming off medication entirely. It was not ideal, but it seemed safer than continuing to search for an antipsychotic that I could tolerate.

I spent the next eight years unmedicated, convinced that I had recovered and that I was "well." Looking back, I clearly was not. I was paranoid, preoccupied with ideas of persecution, and often flirting with overvalued ideas and delusions. Yet I maintained that I was functioning perfectly normally.

In many respects, I was.

I worked as a healthcare assistant on an acute psychiatric admissions ward for two years. I spent a year teaching control and restraint techniques to NHS staff. When I realised that career progression would eventually require a move into nursing, I left to pursue a PhD. Alongside my doctoral studies, I consulted for charities in the alternative education sector, worked as a private tutor, proofread academic work for other students, and eventually secured a full-time position with a localisation firm that carried out extensive work for the pharmaceutical industry.

On the surface, I looked productive and successful: employed full-time, studying for a PhD, and raising a young daughter. Behind closed doors, I was suspicious, paranoid, and only faintly tethered to reality.

Living with someone under constant stress and quietly battling psychotic symptoms takes its toll. My former partner eventually fell out of love with me, and I do not blame her. I am honestly amazed that she stayed as long as she did.

Following my second psychotic episode, I was finally placed on maintenance therapy and developed the negative syndrome that had largely spared me during the first decade after my diagnosis. Once it arrived, things that most people take for granted became incredibly difficult.

An hour at the park with my family could leave me exhausted for days. I slept fourteen hours a night. Even now, not much has changed.

As my functioning declined, I fell into a deep depression. I became convinced that my presence in my partner's home was making everyone around me miserable and anxious. Eventually, I moved in with my mother.

Things became harder still.

I was now living an hour away from my daughter. Despite having never missed a school pick-up, I found myself struggling to maintain even basic routines. At the same time, I was trying to continue working in a psychiatric intensive care unit. Constant exposure to aggression, antisocial behaviour, and what I felt were repeated examples of poor clinical practice became increasingly difficult to tolerate.

Eventually, I left healthcare altogether.

My depression deepened. I made an attempt on my life before ultimately seeking help myself. After three days in hospital, I realised that something had to change.

I found myself in an uncomfortable grey area. I was not as severely disabled as many people with schizophrenia, but neither was I well enough to sustain full-time employment. I had already been denied Personal Independence Payment twice and had no clear idea how I was supposed to rebuild my life when even searching for work felt overwhelming.

I began claiming Universal Credit while signed off sick from work. Because I was submitting fit notes, I was placed on what the Department for Work and Pensions calls the health journey. At the time, I had no idea what that meant. I completed a health questionnaire with little thought and eventually underwent a work capability assessment.

Some weeks later, I was informed that I had been assessed as having Limited Capability for Work and Work-Related Activity (LCWRA).

I had never even heard of LCWRA.

Not long afterwards, my mother asked me to leave. Faced with finding accommodation, I contacted Universal Credit and was told that housing support would be available once I secured a tenancy. I eventually found a small flat near my daughter's school and submitted the tenancy agreement.

That is where I live today.

I am enormously relieved that this support exists. Before entering the system, I had no idea that LCWRA was available. Without it, I would almost certainly have become homeless.

The reality, however, looks very different from the picture often presented in the media.

Since my second psychotic episode, my condition has worsened significantly. I have begun hearing voices, something that was entirely absent during the first decade after my diagnosis. Fortunately, they are benign. Sometimes I hear my former partner asking whether I am okay. Sometimes I hear snippets of music that I do not recognise. Occasionally, I hear what sounds like someone speaking just behind my right ear.

My memory has deteriorated dramatically. I routinely boil the kettle two or three times because I cannot remember whether I have already done it. I have left hobs and ovens running overnight without realising. Everyday tasks that once required no effort now demand constant attention.

At the same time, I have watched public discussion of the benefits system with growing disbelief.

Many people seem to imagine that disability benefits provide a comfortable alternative to employment. That has not been my experience.

Before I became too unwell to work, I earned around £40,000 a year, taking home roughly £2,600 a month after tax.

Today, my monthly income is approximately £1,377.

My rent exceeds the local housing allowance, meaning I must make up the difference from my living costs. After rent, utilities, and council tax, I am left with roughly £200 a month for food.

In practice, this means making choices most people never have to think about.

Bread and milk, or eggs and butter.

One, but not both.

Every grocery shop is planned with military precision because mistakes have consequences.

I live in a state of constant financial precarity. If my landlord increased my rent by £100 a month, I would face a genuine risk of homelessness. I have no savings. When I buy furniture, birthday presents, or Christmas presents for my daughter, it is usually because I have managed to secure occasional lived-experience advisory work. Even then, payment often arrives six to twelve months later, if it arrives at all.

Most recently, I was paid eighteen months after completing a project.

The payment arrived as a foreign cheque.

I cannot cash it.

When I think about my own circumstances, I often find myself thinking back to the interviews I conducted during my PhD. Many participants spoke about financial hardship. Some described carefully restricting their activities to ensure that they could afford food and housing. Others reported not watching television because they could not afford a licence. One participant described corned beef and rice as a luxury meal.

At the time, I understood these accounts academically.

Now I understand them personally.

The idea that people receiving disability benefits are living lavishly while laughing at the taxpayer needs to be laid to rest. Most seriously unwell people are not living comfortably. They are trying to remain housed, fed, and as well as possible while navigating illness under significant financial constraint.

That reality deserves far more attention than it receives.