PCOS, youth jobs, and the UK’s quiet war over who gets to be heard
From renaming a health condition to disabled youth left behind, Britain’s battles over visibility reveal a society that still decides who deserves a voice—and who doesn’t.
Britain has a habit of pretending it listens. The NHS pledges patient-centred care. The government vows to tackle youth unemployment. Yet when the people most affected try to speak—when women demand their pain be named, when disabled young adults ask for a fair shot at work—the system often answers with silence, or worse, with rules that erase them.
This week, two stories laid bare that contradiction. One is about language: the fight to rename polycystic ovary syndrome (PCOS), a condition that affects one in ten women but is still dismissed as "just irregular periods." The other is about labour: the appointment of a former M&S chief to fix a youth unemployment crisis that has left disabled and depressed young people stranded. Both reveal the same truth: in Britain, visibility is a privilege, and the gatekeepers of that privilege are rarely those who need it most.
The name that wasn’t meant to be heard
Rochelle Lewis didn’t set out to start a movement. She just wanted her pain to be taken seriously. Diagnosed with PCOS at 16, she spent years hearing doctors call it a "lifestyle issue," a "weight problem," or—most infuriatingly—"just how women are." The name itself, she argues, is part of the problem. "Polycystic ovary syndrome" sounds clinical, almost benign. It doesn’t capture the reality: the infertility, the insulin resistance, the depression that comes when your body feels like a betrayal.
Lewis is one of 170 million women worldwide with PCOS, yet the condition remains under-researched, underfunded, and misunderstood. A campaign to rename it—suggestions include "metabolic reproductive syndrome" or "hyperandrogenic anovulation"—has gained traction, not just for accuracy, but for visibility. Names shape narratives. If PCOS were called "ovarian metabolic disorder," would doctors still tell women to "just lose weight"? Would pharmaceutical companies finally invest in treatments beyond birth control pills?
The NHS, for its part, has been slow to act. A 2023 report by the All-Party Parliamentary Group on PCOS found that 40% of women waited over two years for a diagnosis, and 30% saw more than four doctors before being believed. The problem isn’t just medical—it’s cultural. Women’s pain has always been easier to dismiss when it’s framed as a personal failing rather than a systemic issue. Renaming PCOS won’t fix that overnight, but it’s a start. The question is whether the gatekeepers of medical language—mostly men, mostly white, mostly able-bodied—will let the change happen.
The jobs summit that forgot the disabled
While Lewis fights for words, Marc Bolland, the former Marks & Spencer CEO, is tasked with fixing a crisis that has left nearly 800,000 young Britons not in education, employment, or training (NEET). His mission? A "summit of business leaders" to tackle youth unemployment. The problem? The summit’s guest list looks a lot like the problem itself: corporate elites who’ve spent decades outsourcing jobs, automating roles, and designing workplaces that exclude anyone who doesn’t fit the "ideal worker" mould.
The government’s own data shows that disabled young people are twice as likely to be NEET as their non-disabled peers. For those with depression or anxiety, the figure jumps to 40%. Yet Bolland’s appointment—hailed as a "business-led solution"—suggests the answer lies in more of the same: top-down initiatives that prioritise shareholder returns over structural change. It’s the same logic that led to the Access to Work scheme being underfunded, or to employers treating reasonable adjustments as a favour rather than a legal obligation.
The irony is stark. Britain’s economy is built on the myth of meritocracy, yet its labour market is designed to exclude. Disabled young people aren’t failing to find work—the system is failing them. A summit won’t change that. What might? Mandatory disability awareness training for hiring managers. Enforcing the Equality Act with real penalties. Treating youth unemployment not as a PR problem, but as a civil rights issue.
The erasure playbook
PCOS and youth unemployment aren’t just separate crises—they’re symptoms of the same disease: a society that decides who gets to be seen, heard, and valued. The playbook is familiar. First, minimise the problem. ("It’s just irregular periods." "They’re just lazy.") Then, individualise the blame. ("Have you tried losing weight?" "Why don’t you just get a job?") Finally, offer token solutions that don’t challenge the status quo. A name change here, a jobs summit there.
What’s missing is agency. Women with PCOS aren’t asking for pity—they’re demanding research, funding, and respect. Disabled young people aren’t looking for charity—they want workplaces that accommodate them, not systems that punish them for existing. The common thread? Both groups are fighting to be heard in a country that’s still deciding whether they deserve a voice.
The Labour government has promised a "new deal" for workers and a "women’s health strategy." But strategies don’t change systems—people do. And right now, the people who need change most are still being told to wait their turn.
