The Frustration of Unpredictable Migraine Attacks

Living with chronic migraines means living in a state of constant unpredictability. I wake up in the morning and do a quick body scan - what hurts, what feels sore or stiff, what needs heat or ice or gentle stretching, and finally, how does my head feel? Is there any tightness in my neck? A lingering sensitivity to light? Even when everything seems fine, I know better than to trust it completely.

Because in my experience with migraines, the moment you start to feel safe is often the moment the rug gets pulled out from under you, when my body betrays me.

The challenge of planning

One of the hardest parts of living with chronic migraine isn't just the pain itself. It's the way the attacks insert themselves into every aspect of my life, often at the worst possible times. I can have the best intentions, the most carefully laid plans, but my body doesn't care. It doesn't care about the work meetings, the family events, or the long-awaited girls' night. It doesn't care that I was looking forward to something or that people were counting on me to be there. It doesn't care that I've done everything "right" when it comes to caring for and trying to prevent a migraine - I drank enough water, I avoided my triggers, I got enough rest. But what about when none of that matters?

When a migraine hits, it hits. And suddenly, all those plans are irrelevant.

Guilt and isolation from canceling plans

I often feel both guilt and isolation when thinking about canceling plans. In all honesty, I've lost count of the number of times I've had to send the dreaded "I'm so sorry, but I have a migraine" text. At first, people are understanding. They respond with "Feel better soon!" or "No worries, we'll reschedule!" But when it happens over and over and over again, when you keep having to be the one who cancels, I've noticed that other people's understanding starts to shift into frustration. It's not their fault. They've just never lived with chronic pain before.

Because of this, I've developed a complicated relationship with making plans. When someone asks me to commit to something in advance, I hesitate, filled with anxiety and often even dread. Not because I don't want to attend whatever they've so kindly offered to include me in, but because I don't know if my body will cooperate. If I say yes in the moment, will I end up forced to cancel at the last minute? If I say no, am I letting my illness steal more from me than it already has?

It’s exhausting, this constant tug-of-war between hope and caution.

Coping with unpredictable migraine attacks

Over time, I've learned that being angry at my body doesn't change anything. The migraine attacks come whether I rage against them or not. The frustration is real, but I try to remind myself that it's not my fault. That I am not my illness. That my worth is not measured by my ability to attend every event or fulfill every obligation. That's when I do show up - in person, or even via phone - I try to be fully present, not distracted, and to live in that moment. That moment that someone needed, or hoped for, or was looking forward to. That moment that made me feel human.

I've also learned to be more open about my struggles. Instead of just canceling plans, I try to be honest: "I'd love to come, but I may need to cancel at the last minute if I'm struggling with my migraines. Would that be okay?" More often than not, people appreciate the transparency. And the ones who don't? Well, I've come to accept that not everyone will understand. And that's okay, too.

So, I take it day by day. I do my best. I listen to my body. And I remind myself that even when my body betrays me, I am still enough. Even on the days when I can't show up, I am still worthy of love, understanding, and compassion...including my own.

Have you experienced this push and pull before? How do you navigate it on a daily basis?