Dear Scientist,

I am writing to you not just as a patient, but as someone whose life has been profoundly shaped by an illness that is largely invisible. I live with migraine — a disease that has robbed me of moments both big and small. It has shaped my choices in ways I never would have imagined.

Migraine is not just a headache. It is a force that dictates my life. The pain alone is unbearable — a searing, pulsating agony that makes even the softest light and quietest sounds intolerable. But migraine is so much more than pain. It steals my words, leaving me grasping for simple phrases as aphasia scrambles my ability to speak. It distorts my vision, makes my limbs weak, and fills me with nausea so intense that I cannot stand. I have spent too many days in a darkened room, unable to move, unable to function, while life continues on without me.

What makes this even harder is that migraine is invisible. If I had a cast on my arm, people might better understand my limitations. But because migraine cannot be seen, I have spent years defending my reality. I have never once faked being sick, but I have faked being well more times than I can count: pushing through meetings, smiling at social events, parenting through pain, all while feeling like my brain is attacking itself from the inside.

As a woman in the prime of my life, I should be thriving — building a career, raising a family, fully engaging in the world around me. Instead, I have been forced to make decisions based not on what I want, but on what migraine allows. I have lost opportunities, relationships, and time. This is a disease that disproportionately affects women, and it is underfunded, misunderstood, and too often dismissed.

Menstrual migraine, migraine that happens around my period, adds another layer to this burden. Hormonal fluctuations trigger some of my worst attacks — days of incapacitation tied to a biological rhythm I cannot escape. It is yet another way that migraine entangles itself into the most fundamental aspects of my life.

And now, I watch my 5-year-old daughter begin to experience migraine attacks of her own. She is just beginning her life, and already, this disease is creeping in. Will her path be limited in the same way mine has been? Will she miss out on the things that make life full and meaningful, forced to endure this suffering without relief?

So I ask you, as a scientist: Why does migraine so disproportionately impact women? What role do hormones, genetics, or environmental factors play?  What advice do you have for people like me, and now my daughter, to reclaim our lives?

I don’t want sympathy. I want answers. I want to believe that a future exists where migraine does not dictate the terms of our lives. And I hope that, with your work, we’ll be one step closer to that reality.

Sincerely,
Jenn S.