The benefits system in the UK is a monster looming on the periphery of every unfortunate soul that interacts with it. It will fight you tooth and nail when you look for help, often causing untold harm in the process. But when you’re finally let inside, it keeps you there under lock and key. You cannot escape.
If you improve even slightly, you lose everything. Your stability, the foundation upon which your new and improved life rests, could be systematically destroyed at a moment’s notice. I know this because I, too, am trapped. And willing to bet that there are thousands more like me across the UK: afraid to improve, to venture back into the world, because everything they have rests on this precarious foundation.
Floundering in the depths
I was in my teens when I had my first contact with the Department for Work and Pensions (DWP) and its benefits system. Having grown up in a fractious environment, it’s no surprise that I swiftly fell down the hole of depression, with social anxiety rearing its head not long afterwards. I seemed, almost overnight, to change from an extroverted teenager into something akin to a hermit.
With those around me concerned, we made a first attempt at gaining Personal Independence Payment (PIP). I was given scores of zero across the board, a short explanation saying I was just like every other teenager and would soon grow out of it. I reasoned then, as I have many times since, that I wasn’t broken enough for that kind of support. That perhaps I was just too much in my own head about the situation and didn’t really need the support.
I was then a young carer for my brother, who has Asperger’s syndrome. The combination of that role, the mental health demons I was fighting, and the continued instability in my house compounded the issues I experienced. I’d previously have ventured out with friends, but hid away at home.
Around that time I was called into a meeting with staff members in my sixth form placement. They essentially told me they didn’t think I’d get anything remotely useful from my time there due to my personal situation and mental health issues, and strongly suggested that I stop attending. Numb, I did just that. In retrospect, I think isolating myself even further from the outside world didn’t do me any favours.
The weight of isolation
I tried to seek support from the DWP once more in my late teens, on the advice of an NHS-appointed therapist and a Citizens Advice Bureau (CAB) advisor. I was met once again with a single paragraph on the back of my returned PIP assessment. In summary, it said I was a completely normal young adult, lying about any special difficulties I claimed to be having. Having already spent years in complete mental disarray, to have ‘those in charge’ repeat that I was fine was incredibly damaging.
I think it was around then that I started to believe myself to be something akin to a liar. It had slowly but surely been drilled into me that all the problems I believed I had weren’t real; that I was making a fuss over nothing. That the cold sweats, panic attacks, and intense emotional distress were fake, attention-seeking, just my imagination.
Even now, a decade on, such thoughts still creep into my mind. Must I live with this manufactured shame for the rest of my life?
It may not surprise you to read that, for a considerable time after that, I didn’t attempt to receive any help from the government in any form. Any further interactions were too much of a risk, even though that meant poverty as the alternative.
Invisible battlefields: fibromyalgia
If you’ve experienced any of the plethora of symptoms connected to fibromyalgia, you know the symptoms themselves are frequently the cause of misdiagnosis, or no diagnosis at all. In my case, it was the latter.
In the midst of a mental health crisis I began to experience intense limb and joint pain, migraines, and incredible fatigue. As you could imagine, this was a source of considerable distress. When I had what I later found out were panic attacks, I asked my partner to take me to the hospital as I feared I was having a heart attack. To their credit, they treated me quickly, running many tests, but fell short of a diagnosis. This was the first time I was told my symptoms were psychosomatic. Or, in layman’s terms, all in my head.
You may wince at the thought of such dismissal being offered so casually, and you’d be right to. Here I was again, being told by professionals that what I experienced wasn’t real. From this point I was truly broken and lost. There were many nights of panic attacks: heart thumping and ears ringing, I could barely see. I’d lie in the foetal position waiting for it to pass. All the while trying to convince myself it was only in my mind.
It’s painful to remember now, so I’ll leave it there. Needless to say, when I was finally listened to by a GP, and provided medication on the off-chance it’d reduce limb and joint pain, I was elated. The medication did help, my muscles stopped spasming as much. I still had flare-ups and bad days, but it was real, not just in my head. The whole time it was real. I had a diagnosis.
Embracing a fragile future
With this diagnosis, a wealth of historical evidence, and support from my partner and the CAB, it was decided once again that we’d try and get DWP assistance. I was refused on the first assessment. But this time, with the strength afforded me by those around me, I decided to challenge that. I was refused again. Only when I pursued the matter further, towards a separate tribunal, was I finally granted the support I needed and awarded PIP.
At last, I achieved what I’d spent years fighting for. Yet all I could think of was how quickly and easily it could be ripped away. Was this victory?
Despite the relentless challenges and the scars left by austerity and the system’s indifference, I do now – tentatively – embrace hope. It’s a fragile ember, flickering in the shadows cast by years of neglect, but it burns nonetheless. For the first time in what feels like an eternity, I dare to imagine a future beyond the confines of the benefits system. A future where my worth isn’t reduced to a mere entry in a bureaucratic spreadsheet.
But as I cautiously navigate this newfound sense of optimism, the spectre of uncertainty still looms large. The fear that everything I’ve painstakingly built could be torn asunder by a single decision made by a faceless bureaucrat still gnaws at my soul. It’s a fear born of experience, of all the instances when my fate hung precariously in the balance, subject to the whims of a system that too often seems indifferent to human suffering.
A benefits system of benefit
This is the crux of the matter. For some, decisions made within the confines of government offices may be just mundane tasks in a long list of administrative duties. For people like myself, they carry life-altering consequences. The stroke of a pen, the click of a mouse – these seemingly innocuous actions wield the power to dismantle the fragile scaffolding of stability we worked so hard to construct.
But I refuse to succumb to despair. I refuse to accept a reality in which my worth is dictated by the arbitrary judgments of a system that fails to see beyond a balance sheet. Instead, I choose to raise my voice in defiance, to demand a system that treats people with dignity and compassion rather than suspicion and disdain.
Change isn’t merely desirable – it’s imperative. The current benefits system is unsustainable and unacceptable. It dehumanises those holding the pens, too. It’s time to envision a future where people are empowered to reclaim agency over their lives, where support systems serve as catalysts for growth rather than barriers to progress. Where we don’t have to stay broken to have a measure of stability.
I’m acutely aware of the long and arduous road that vision represents. But I’m also filled with a sense of purpose and a conviction that, together, we can dismantle such oppressive structures. That we can create a world in which we’re believed, and have self-belief.
