Ivy shares what migraine means for her and why the perception of migraine needs to change, even among those living with the condition

“Migraine means having to wait, sometimes years for diagnosis”

It started when I was around seven years old. These “headaches”. I’d feel pain. Struggle with strong smells. Cover my ears when everyday sounds were too much to bear. I’d leave school. Go to the doctors. Stay in dark rooms. I had no answers, just mere suggestions until I was fifteen years old and diagnosed with chronic migraine. At which point it was too late. This seems to be all too common – The Migraine Trust have been calling for the appropriate healthcare in the correct settings and highlighting the negative impact that delays in diagnosis can have.

I had no way of managing my symptoms while I struggled with the stresses GCSE exams bring. The days I spent at home increased with the frequency of my attacks. By sixteen I’d left school. Attending sixth form in person was no longer feasible. So, I watched my friends continue onto A levels and what was once my life, move on without me. Unfortunately, I know I’m not the only one with this experience.

About eight years have passed since then. I’ve graduated university, started a new treatment which actually helps, and my life is far better now than I could’ve ever imagined only a little while ago.

“Migraine means having to advocate for yourself in order to get support”

Though things are going well for me now, I can’t help but feel that a large part of the impact migraine has had on my life was totally avoidable. My symptoms were consistently dismissed. I grew up thinking I “just had headaches” and so never learnt anything more about them. It felt more like a personality trait than a medical condition, until it changed the trajectory of my life.

I had to go through a process of educating myself. Learning about how migraine presented in my life– from symptoms to triggers to general self-care. My new understanding of my condition meant I was able to advocate for myself in different settings whether it was with doctors or family and friends.

These days I rarely come across people in my personal circles who don’t take my experience of migraine seriously because of the mark it’s left. But it’s a shame that I had to go through so much for a diagnosis and that now even with it I still feel the need to explain how I got here just for it to be given respect.

“Migraine means feeling I have to explain myself, even to other people who have migraine”

While I know that everyone has different experiences of migraine and to compare one to another would be futile at best, I always find it interesting when people seem compelled to add a prefix to their diagnosis, it’s “I get really bad migraine attacks”, as if migraine alone isn’t simply enough.

It speaks to a culture that minimises the reality of what it is to live with migraine that one can go so long with textbook symptoms evading diagnosis and even still once named its title alone is not enough for support. It’s still on you to explain why. And though advocating for yourself is important, it’s exhausting constantly trying to think of new ways to help other people understand.

This Migraine Awareness Week lets choose compassion over comparison for people in this community with an experience different to our own. And for those living without migraine, maybe take a little time to educate yourself on what migraine really means, it could make a world of difference.