5 Things I Would Tell My Former Self About Living With Migraine

Lessons learned from a decade of living with migraine

Patient Expert
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More than 10 years have passed since I received a diagnosis of hemiplegic migraines for the stroke-like symptoms that landed me in an emergency room in Hawaii. What would I tell my younger self if I could go back to that moment?

1. Your body is shouting. Listen.

Perfectly healthy bodies don’t tend to end up in the ER. Your body—and the doctor—is trying to tell you something and you need to heed the warnings: slow down and take care. Or you’ll find yourself back here in this hospital bed with the same terrifying symptoms or worse.

2. Denying your diagnosis won’t change or cure it.

I know you’re exhausted and overwhelmed—by the abrupt arrival of puzzling and painful symptoms, the effects of unfamiliar pharmaceuticals now coursing through your body, and this rare neurological condition the doctor has only briefly described. You want to write it off as a one-off incident, get out of this frigid ER, and get on with your life. You are young, strong, and adventurous, so you believe you can’t actually be sick. And even if you are ill, surely you can will yourself well again, right?

I wish it were that simple.

But this isn’t a fluke and you can’t overcome hemiplegic migraines with sheer determination. This is a chronic condition and the only way to manage it is to understand it, identify triggers, and adjust your lifestyle and diet to prevent attacks as much as possible. No amount of ambition or denial can cure you. In fact, that approach is dangerous and will only delay proper management of your condition.

Accepting your diagnosis doesn’t mean giving up your ambitious plans to wander the world. It just means making room in your life to manage this chronic condition so that you can continue to travel and experience life beyond a hospital bed.

3. Don’t let your fear of appearing “weak” prevent you from instituting self-care strategies

Your working-class roots have no doubt made you strong and resilient. But they’ve also made you self-conscious about showing any weakness. You spent a lifetime believing that sufficient sleep, consistent medical care, massages, and holidays away from work were luxuries you couldn’t afford. It’s time to let go of these beliefs. Your health depends on it.

You wonder what people will think if you adjust your lifestyle to allow time for self-care. They might call you lazy or consider you a hypochondriac because you are living with a condition they can’t see. Who cares what they think? Your worth does not depend on anyone else’s understanding or acceptance of you.

4. This is not the end. There are many more adventures ahead.

Accepting your diagnosis doesn’t mean giving up your ambitious plans to wander the world. It just means making room in your life to manage this chronic condition so that you can continue to travel and experience life beyond a hospital bed. The sooner you accept this, the sooner you can educate yourself on your rare condition and identify prevention and management strategies that will enable you to continue your international adventures. And spoiler alert: You’ll eventually become so good at managing your migraines that you will even tackle what probably seems impossible now—a 44-day, 400-plus mile hike across an entire country.

5. Your pain is your power.

Lying in the ER with a migraine hangover, you might have a hard time believing this. But trust me, it will become your mantra: My pain is my power. You will find new strength in unexpected places where pain—both physical and emotional—once reigned. And when you realize this and start to share your raw and real stories, others will feel safe and inspired to follow suit. You’ll receive emails and messages from perfect strangers thanking you for sharing your struggles that, in turn, gave them permission to acknowledge and share their own. Soon, you will see how your pain can truly be transformed into a superpower.