The Stories Others Tell About You

You know the moment.

Someone finds out you have migraines. Their face shifts — something between concern and inspiration — and they lean forward. “Have you tried cutting out gluten? My cousin did that and hers completely disappeared.”

You smile. You nod. And somewhere behind your ribs, thirty years of lived experience tightens into a fist.

Neurologist appointments. A drawer full of preventive medications, half-tried and abandoned. An ER visit in August where the fluorescent lights felt like shards of ice behind your eyes. A migraine diary thick enough to use as a doorstop. And in a single sentence, a person who has never felt the particular way migraine unmakes a Tuesday hands you their solution.

That moment has a name in philosophy. It’s called testimonial injustice — when your credibility as a knower of your own body is quietly downgraded, not through cruelty, but through the casual authority of people who have never inhabited your experience.^[1] It happens to people with migraine constantly. And it causes real, measurable harm.

This is the story of what that does to you. And what you can do to take your story back.

The Story Written Over Yours

When someone offers unsolicited advice, they are not only suggesting a remedy. They are proposing a narrative.

Their story says: migraine is a problem with a simple solution you haven’t found yet, because you haven’t tried hard enough or in the right direction. Accept that story — absorb the shame embedded in it — and you become a character in a plot you didn’t write. The patient who hasn’t been resourceful enough. Who is still sick by some degree of her own fault.

The Migraine Trust surveyed more than 1,000 people in 2024 and found that being dismissed — mischaracterized as having “just a headache” — was among the most significant drivers of psychological distress.^[2] When asked how migraine makes them feel, 62% said anxious. Followed by depressed, hopeless, lonely, and angry.^[2] Those are not simply responses to pain. They are responses to not being believed.

The numbers are starker than most people realize. More than 75% of spouses of people with chronic migraine did not fully believe their partners about their headaches.^[3] Three out of four people in the closest relationship available.

A 2024 population-based study in Neurology — the OVERCOME analysis — found that 31.7% of migraine patients experienced stigma often or very often, and this stigma was independently associated with greater disability and significantly reduced quality of life.^[4] Not the pain. The stigma. The story other people held about the condition was itself disabling.

Three Kinds of Stigma, One Common Weapon

Not all the pressure to diminish your experience looks the same.

A 2024 review in the Journal of Clinical Medicine identified three interlocking types.^[5] Public stigma lives in comments, raised eyebrows, the colleague who questions your absence. “Have you tried drinking water” is its most condensed form — a single sentence that erases neurological complexity and reimagines a brain disease as a hydration problem.

Structural stigma is embedded at a deeper level. NIH funding for migraine sits at $0.36 per affected person. For stroke: $48.57. For epilepsy: $35.15.^[5] This isn’t a footnote — it is a policy statement. It says migraine does not deserve sustained attention. That message radiates outward into culture, into clinical practice, into the assumptions people make before you’ve said a word.

Internalized stigma is the most corrosive. It’s when you absorb those public messages and begin enforcing them on yourself. Feeling guilty for canceling plans. Minimizing your pain before others can minimize it first. Quietly wondering whether you are somehow the reason treatment isn’t working.

Research shows internalized stigma has medium to large associations with both migraine-related disability and emotional quality of life.^[6] The story others tell about your illness can, over time, become the story you tell yourself. That is when the real damage sets in.

The Narrative Society Demands

To understand why the “just drink water” dynamic persists, it helps to look at what sociologist Arthur W. Frank observed about the stories that culture can and cannot hold.

In his landmark work The Wounded Storyteller, Frank identified three templates through which people make sense of illness.^[7] The restitution narrative follows a single arc: yesterday I was healthy, today I’m sick, but tomorrow I’ll be healthy again. This is the story Western culture most wants to hear. The dramatic return. The miracle resolved. Frank noted that healthy people need ill people to tell this story, because it holds their own fear of irresolvable illness at a safe distance.^[7, 8] It keeps the world comprehensible.

The chaos narrative is the anti-story — and then and then and then — because the person telling it is too deep inside the illness to stand outside it and narrate.

The quest narrative is something else entirely: a story where illness becomes a genuine turning point, not something to survive and move past, but something that reorients what matters and ultimately belongs to the person living it.

The problem is this: the people offering you remedies only know how to hear one of these three. When you cannot deliver a restitution story — when you’re not cured, when you’re still managing, adapting, negotiating — they grow uncomfortable. They offer solutions because a solved problem fits into a narrative they can hold. The chronic, complex, invisible reality of migraine does not.

So they substitute their story for yours.

A meta-synthesis of qualitative migraine studies found that patients consistently experienced this substitution as social withdrawal, invalidation, and a profound sense of being misunderstood — with direct consequences for emotional health and the willingness to seek help at all.^[9]

When Your Expertise Gets Dismissed

Philosopher Miranda Fricker introduced epistemic injustice to describe what happens when someone is wronged specifically as a knower.^[1] In chronic illness, it operates in two precise ways.

Testimonial injustice is when your account of your own body is treated as less credible than it deserves. This doesn’t require a villain. It happens when a well-meaning family member assumes their magazine article outranks your years of documented experience. It happens when a doctor says you’ve come to urgent care “too often” and asks whether you’ve “done everything you can.” Research shows that people with chronic pain who face repeated dismissal develop anticipatory silence — they stop describing their pain entirely — and internalize deep doubt about their own credibility.^[10] The injustice teaches them not to speak.

Hermeneutical injustice is subtler. It occurs when no shared language exists to represent what you’re experiencing. When migraine collapses into “headache,” an entire landscape disappears: the prodrome, the allodynia, the postdrome, the cognitive fog, the interictal anxiety that lives in the space between attacks. The listener’s vocabulary cannot hold the reality the speaker needs to express. So the speaker goes unheard — not because no one is listening, but because the available words don’t reach that far.

A 2025 qualitative study found something that should be unremarkable but isn’t: rare moments of sincere acknowledgment — simply being told “I believe you” — were experienced as transformative by people navigating chronic pain.^[11] Three words. After years of narrative erosion. That is the size of the wound these stories leave.

Narrative Therapy: The Map for Getting Back

Narrative therapy, developed in the 1980s by Michael White and David Epston, begins from a deceptively simple premise: the stories people tell about their lives determine what they believe is possible within those lives.^[12]

White and Epston described the dominant narrative — the thick, heavily-reinforced story a person carries about who they are in relation to their problem.^[12] For many people with migraine, that narrative was written largely by others. A doctor who once implied it was psychological. A family that treats every attack as an opening for advice. A culture that handed the restitution narrative a monopoly and called everything else inadequate.

The goal of narrative therapy is not to deny the difficulty. It’s to recover the alternative story — the events, values, and capacities the dominant narrative has made invisible. The time you restructured your career around your health, not in defeat but in self-knowledge. The relationships that proved themselves when others didn’t. The depth of self-understanding that people without chronic illness rarely develop, because they never had to.

The foundational technique is externalization: creating deliberate distance between the person and the problem. “I am a migraineur” collapses identity and illness into a single, inescapable word. “I am a person who lives with migraine” creates space — you have a relationship with a condition, but you are not reducible to it.^[12, 13] This is not wordplay. Research shows that emotional suppression — which intensifies when a person’s illness narrative is repeatedly invalidated — is directly associated with greater migraine severity and the risk of chronification.^[14]

Reclaiming Your Narrative: Five Ways Back

Reclaiming your narrative is not about constructing a triumphant spin that flattens the hard parts. Frank was explicit: forcing a restitution arc onto a story that doesn’t have one is its own form of violence.^[7] The goal is a story that is true, that is yours, and that restores your sense of agency within it.

Name the outside narratives when they arrive. When someone offers unsolicited advice, see it clearly for what it is: their story, not a verdict on yours. You don’t have to say this aloud. But naming it internally — that is a restitution narrative, and mine is different — removes its power to colonize your self-concept.

Document your expertise. You are the world’s foremost authority on your migraine. You hold years of patterns, failed and successful interventions, adaptive strategies, and self-knowledge that no one else has. Write it down — not for your doctor, for yourself. This is a narrative act. It says: I am a legitimate knower of my own experience.

Look for unique outcomes. In narrative therapy, these are the moments the dominant problem-story edited out. The attack you managed without losing everything. The way you learned to ask precisely for what you need. The friendship that survived a hundred canceled plans. These threads were always part of your story. They just didn’t fit the story others expected you to tell.

Choose your witnesses. Frank described co-witnesses in illness storytelling — people who can hold your story without requiring it to end a particular way.^[7] A therapist, a partner who has learned to listen, a community of people who share the experience. The DRONE narrative medicine study found that patients showed markedly better wellbeing and care adherence when they encountered genuine narrative empathy.^[15] Being heard — actually heard — is not a soft comfort. It has clinical significance.

Reclaim your vocabulary. The language you use in conversations with others, and with yourself, shapes the story. You do not have a “bad headache.” You live with a neurological condition affecting the brain’s sensory processing systems, causing up to 15 or more disabling days per month in the chronic form, ranking among the top causes of disability in people under 50 worldwide.^[16] Imprecise language invites dismissal. Precise language protects dignity.

The Story That Belongs to You

There is a sentence in Arthur Frank that I keep returning to. He writes that the ill person who turns illness into story transforms fate into experience — and the disease that sets the body apart from others becomes, in the story, the common bond of suffering that joins bodies in their shared vulnerability.^[7]

After thirty years with migraine, I have had every version of the well-meaning advice. The yoga. The gluten. The crystals. The warm compress. The cold compress. The herbs that a friend’s aunt swore by.

What I’ve learned is that those moments are not really about me. They’re about the other person’s need for a resolved story — for the comfort of a problem that can be fixed. When I understood that, something shifted. Their story stopped crowding out mine.

Your migraine story doesn’t need to end in triumph. It doesn’t need to end at all. It needs to be yours — shaped by your experience, held by your voice, complex enough to carry thirty years of a life actually lived.

No one else gets to write that.