The Politics of Pain: Whose Stories Get Funded?

Fibromyalgia sits at a strange crossroads: millions live with it, yet it remains underfunded, misunderstood, and frequently dismissed. It’s not just a problem of biology or medicine—it’s also a problem of politics. Who decides which conditions get research money? Which diseases attract pharmaceutical investment? Which patient voices are amplified in media and medicine, and which are left to echo only in online forums?

The reality is this: pain is political. Whose stories get funded depends on visibility, stigma, economics, and power. To understand fibro’s neglect, we have to look at the politics of pain.

Why Pain Research Struggles

Subjectivity: Pain is invisible. Without biomarkers or scans, it’s treated as less “real” than measurable diseases.
Stigma: Conditions with overlapping psychiatric or “functional” labels (fibro, ME/CFS, IBS) face extra skepticism.
Gender bias: Chronic pain disproportionately affects women, whose symptoms have historically been dismissed as “hysteria” or “stress.”
Fragmentation: Pain research is scattered across rheumatology, neurology, psychiatry, anesthesiology, and primary care, leaving no single funding home.
Economic factors: Diseases with clear drug targets attract pharma money; fibro’s complexity resists a “one-pill cure.”

The result? A condition affecting millions receives a fraction of the funding given to rarer, more “visible” illnesses.

Whose Stories Get Funded—and Why

1. Visible, Measurable Diseases

Cancer, diabetes, heart disease: their markers are testable, their outcomes quantifiable, their treatments marketable. They attract billions in research dollars. Fibro, by contrast, can’t be seen on scans, making it less fundable.

2. Conditions with Strong Advocacy Lobbies

HIV/AIDS, breast cancer, and autism all saw funding rise when patient movements became impossible to ignore. Public marches, symbolic ribbons, celebrity voices—these turned private suffering into national priorities. Fibro advocacy exists, but stigma and fragmentation weaken its collective voice.

3. Diseases that Affect Men in Power

Conditions that affect men, especially in military or workplace contexts (PTSD, traumatic brain injury, cardiovascular disease), historically get prioritized. Fibro, seen as a “women’s illness,” suffers from systemic gender bias in research dollars.

4. Stories That Promise Return on Investment

Pharma and government alike favor conditions where investment yields drugs, devices, or economic productivity. Pain that resists one-size-fits-all solutions doesn’t fit the model.

5. Narratives That Inspire Empathy Without Stigma

Childhood cancers, rare genetic conditions—these inspire compassion without blame. By contrast, fibro patients are often cast as anxious, lazy, or exaggerating. Stigmatized stories attract less funding.

Fibro’s Place in the Politics of Pain

Fibromyalgia research has grown—central sensitization models, autonomic nervous system studies, small-fiber neuropathy investigations. But funding still lags far behind disease burden.

NIH funding for fibro is tiny compared to prevalence.
Patients wait years for new trials or innovative treatments.
Stigma leads to medical gaslighting, which filters up into policymaking: if clinicians doubt fibro, so do funders.

Fibro’s story is caught between invisibility and disbelief—leaving patients under-resourced.

Why Patient Stories Matter

Research money doesn’t just follow science—it follows stories. The way conditions are portrayed in media and advocacy shapes who policymakers listen to.

“Tragic victim” stories can attract sympathy but risk erasing agency.
“Inspirational warrior” stories highlight resilience but hide struggle.
“Lazy malingerer” tropes actively damage funding potential.

The most powerful advocacy blends truth and strategy: showing fibro as both widespread and life-altering, while pushing against stigma and false cures.

Toward a Fairer Model of Funding

1. Patient-led research priorities
Patients know what questions matter: fatigue, flare prediction, sleep repair, nervous system calming. When funding follows these voices, research becomes relevant.

2. Equity audits of funding
Governments should measure research spending against disease burden (DALYs—disability-adjusted life years). Fibro would rise on the list.

3. Broader definitions of “valid” outcomes
Instead of focusing only on pain scales, trials should measure function, quality of life, and flare frequency—things patients care about.

4. Amplified advocacy
Fibro needs louder, unified advocacy—campaigns that destigmatize pain, highlight gender bias, and demand equal research investment.

5. Intersectional lens
Pain funding must address not just gender but also race, class, and geography. Marginalized patients are least likely to be heard, yet often most affected.

My Perspective

I’ve seen how fibro stories are sidelined: friends with cancer receive public empathy and casseroles; friends with fibro receive skepticism and silence. I’ve seen promising studies stall because “pain” isn’t sexy for grants. I’ve seen patients forced into crowdfunding to access treatments that should be standard.

The politics of pain isn’t abstract—it’s the daily reality of whose suffering counts, whose science advances, and whose bodies are left waiting.

FAQs

1. Why does fibro get less funding than rarer diseases?
Because funding follows visibility, advocacy, and economic promise, not just prevalence.

2. Can patient advocacy really shift funding priorities?
Yes—history shows HIV/AIDS, breast cancer, and autism funding all skyrocketed after patient movements mobilized.

3. Why does gender matter so much in pain research?
Because medicine has historically doubted women’s pain, leading to decades of underfunding and dismissal.

4. Are pharma companies uninterested in fibro?
Not uninterested—drugs like pregabalin and duloxetine are approved—but the complexity and variability make blockbuster drugs harder to develop.

5. Does stigma actually influence government budgets?
Yes—if policymakers see fibro as psychosomatic or exaggerated, it won’t rise as a funding priority.

6. How can patients influence funding?
Through advocacy groups, data-sharing, media storytelling, and collective pressure on policymakers.

Final Thoughts

Fibromyalgia is real. It is widespread. It is disabling. Yet it is systematically underfunded because of how pain is politicized. Until fibro stories are told loudly, strategically, and collectively, they will continue to be sidelined in the politics of health.

The challenge—and opportunity—is clear: reframe fibro not as invisible suffering but as urgent unmet need. The more we demand fair funding, the more we tilt the politics of pain toward justice.

Because research isn’t just about science—it’s about whose stories count, whose bodies matter, and whose pain is finally believed.