The Suffering Olympics — and Why Nobody Wins

The term “Suffering Olympics” was coined by Antony Polonsky, a Holocaust studies scholar at Brandeis University, to describe the destructive habit of competing over whose trauma is worse. It has since found a natural, if painful, home in patient communities.

Anyone who has spent time in a support group, fought for a research grant, or tried to explain why their disease matters knows the feeling immediately. You know what it means to be ranked. You know the ranking is real, that it carries consequences, and that it is wrong.

The Suffering Olympics is a multi-sport event. Some diseases get the glamour disciplines: packed stadiums, television coverage, corporate sponsors, celebrity ambassadors. Others are minority pursuits, holding their finals in a car park. Even within each sport, some teams train at world-class facilities while others operate on goodwill and a bake sale. And then there are those who never receive an invitation at all. I will come back to them.

I have played for two teams. I began as a Parkinson’s patient, a well-funded, well-recognised game with the Michael J. Fox Foundation as a kind of shirt sponsor. Then I was transferred, without consultation, to the PSP squad. Same broad sport of neurodegenerative disease. Dramatically worse kit. Nobody asked me. The transfer committee, it turns out, is not the patient.

The Hierarchy of Prestige

There is academic research behind this intuition. A 2018 paper in the Medical Journal of Australia, “Disease Prestige and the Hierarchy of Suffering,” documents what patients already know: diseases are valued differently, and that valuation has almost nothing to do with how much they hurt. Prestige is shaped by prevalence, visibility of symptoms, celebrity association, and investment-friendly treatment pathways. The conclusion, that suffering should not be hierarchical, is obvious and largely ignored.

The funding numbers tell the story. In fiscal year 2024, the NIH allocated $3.6 billion to Alzheimer’s research, $8.1 billion to cancer, and $1.8 billion to heart disease. Parkinson’s receives roughly $250 million annually, widely acknowledged as inadequate, which is why advocacy groups are pushing for $600 million. ALS, which affects roughly the same number of Americans as PSP, has dedicated Congressional legislation and sustained federal funding. PSP has none. No named NIH programme. No protected budget line. Its largest research grant to date, $75.4 million over five years, equates to about $15 million annually. Against Alzheimer’s $3.6 billion, that is well under one percent.

The grant is a genuine achievement and represents meaningful progress. Its first results, however, are projected for 2029, too late to be relevant for many of us living with the disease now.

Because PSP has no formal category at the NIH, it borrows infrastructure from others. Grants are filed under ageing or rare neurological disorders. Data is stored in Alzheimer’s repositories. A disease that has to borrow another disease’s filing cabinet is not one the system has decided to champion. It is one it has decided to tolerate. (Here’s a screenshot I took this morning)

The Psychological Cost

The funding gap is the visible damage. The psychological damage is quieter.

When your disease is low-prestige, poorly understood, hard to diagnose, and lacking treatments that signal progress, the message is not spoken aloud. It arrives through allocation. Through absence. Patients describe a specific exhaustion: not just the fatigue of illness, but the need to explain, defend, and justify why their suffering deserves attention at all.

There is also an internal version of the Suffering Olympics. I have met patients who minimise their own pain because “others have it worse.” This is not perspective. It is self-erasure. Suffering may be relative, but it is not hierarchical. Dismissing our own experience weakens our ability to advocate for ourselves and for anyone else.

The hierarchy cuts both ways. Some patients suffer not from minimising themselves, but from being minimised by those who insist that others have it worse.

Those Without a Team

And then there is the group treated most unjustly of all.

At least I have a diagnosis. A name. A charity. A patient community. I would not wish PSP on anyone, but I recognise the grim privilege of having a ticket into the system at all.

Many do not. They have real, life-altering symptoms with no recognised condition attached: no ICD code, no awareness ribbon, no lobbying body. In the Suffering Olympics, they have no team, no lane, and no right to compete. Often they are told they should not be on the track at all.

A clinician at the NIH’s Undiagnosed Diseases Program describes it plainly. His patients have multiple chronic problems and are clearly unwell, yet look fine to the outside world. They are told “it’s all in your head” while knowing something is deeply wrong. They carry both medical uncertainty and social disbelief simultaneously.

Research identifies three ways this stigma damages people. First, public stigma: the negative judgements of clinicians, employers, and family. Second, self-stigma: as doubt is internalised and patients begin questioning their own experience. Third, label avoidance: people stop seeking help entirely to escape being judged. They vanish from datasets. The problem appears smaller. Funding pressure disappears. The circle closes around people who are already suffering.

From ancient Egypt to modern healthcare, patients with hard-to-measure conditions have been dismissed as hysterical, deceitful, or attention-seeking. The language has changed. The dismissal has not.

Misdiagnosis: The Cost of Invisibility

Nowhere is low prestige more damaging than in misdiagnosis. Nearly 60% of PSP patients in the UK are initially misdiagnosed, often because the disease lacks the decades of diagnostic infrastructure Parkinson’s has built. This is not a failure of clinicians. It is a failure of investment.

Misdiagnosis means late diagnosis. Late diagnosis means fewer patients reach trials, registries, and datasets. That weakens evidence, slows progress, and reinforces neglect. Fix misdiagnosis, and the rest begins to move. That is where the attention needs to go.

Where I Find Myself

I am not bitter.

I am grateful for having a diagnosis, however unwelcome. Grateful for the PSPA, for CurePSP, and for the researchers and advocates who persist on behalf of a disease most people have never heard of. For a rare condition, that support matters enormously.

My concern is for those with no team at all. People whose conditions are so rare, so poorly characterised, or so thoroughly dismissed that no one is fighting for them. Or worse: conditions that may not be rare at all but remain unnamed, uncoded, and uninvestigated.

Those are the people the Suffering Olympics leaves furthest behind.

They are not losing the competition.

They are not allowed to enter.

I am one small cog in this wheel, a PSP patient with a shortened horizon and no power to change the rules of the competition. I hope someone, somewhere, decides to champion a different way. The hierarchy needs to change. That will mean moving a great deal of “cheese” — disrupting entrenched interests in pharmaceutical research, clinical infrastructure, and funding allocation that have calcified over decades. It is no small feat. I will leave the how to people with more knowledge, expertise, and time than me.