May 16, 2024

From Migraine To Migraine Advocacy: A Journey Of Two Decades

I was 17, studying for one of the most career-defining exams of an adolescent’s life in India. It was a particularly stressful time in my existence until then, because in addition to the looming exams, I was in the throes of high-drama social woes typical of adolescent life. 

I would set an alarm for the wee hours, to wake up and study but would instead wake up to the feeling of an axe steadily hacking into one side of my head. Unable to hold my head up, I would go back to sleep. 

As a child I had occasionally feigned a headache to skip school and my parents had laughed and teased me about it, deeply embedding the notion that children and young people don’t get headaches. 

So when I began to experience this unfamiliar axe-hacking, I spent some time gaslighting myself and feeling guilty — was I fabricating all this to avoid studying or to escape from social interactions?

Looking For Validation

After a few months, my mother took me to a neurologist, who summarily pronounced that my pounding headaches were migraine and that there was no cure. I would likely have to live with them lifelong.

Needless to say, those exams yielded sub-optimal results.

Fast-forward to my first job in my twenties, at an academic editing and science communication company. 

Migraine seemed quite common at the workplace: several colleagues lived with it and generally took it in their stride. It did not seem suspicious or disconcerting at all when people chose to work in closed darkened cubicles, their dim computer screens the only source of light. 

As a manager, I occasionally approved leave or work-from-home days when team members had a migraine attack. More often though, colleagues with migraine would be present at the office, powering through the blinding pain and nausea. I did it myself every so often, so of course they could/should too. 

Apart from migraine, I live with a rare disease and multiple medical complications. In my late thirties, my lived experience as a patient led me to pivot my career from my science communication into patient advocacy.

Next Steps That Elevated My Advocacy Journey

I went through the Emerging Advocate Program of the American Migraine Foundation, which opened my eyes to startling statistics about migraine. For example:

  • Migraine is NOT “just a regular headache”. 
  • It’s a disabling neurological disease that affects 1 in 7 people globally and is one of the top 10 disabling medical illnesses worldwide.
  • For more than 90% of those affected, migraine interferes with education, career or social activities.
  • An estimated 8-15% of high school-aged children live with migraine.

In my current role as a Board Member of the Global Patient Advocacy Coalition (GPAC), I’ve become more aware of the stigma associated with migraine at the workplace and the negative productivity impact of people powering through and continuing to work during attacks. 

I champion the wonderful and very important work GPAC is doing to address migraine at the workplace, and I see how my choices as an employee and manager years ago would have been drastically different if I had access to these resources.

Research into migraine treatment has progressed significantly since I was diagnosed at 17, and it is heartening to know that young people being diagnosed today can be given more reassurance than I was given by my neurologist.

Change begins with awareness.

As my migraine story has come full circle, I feel proud and privileged to support the global efforts of GPAC and our partners in raising awareness of migraine. 

I believe that these efforts have the power to positively change the experience of millions of people living with migraine.

 

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