Migraine: The Pain of Being Misunderstood

No, we cannot just lie down and have the pain go away.

Ask anyone living with migraine and they will tell you, the pain is real. In fact, the pain can be so excruciating that it stops you even before the day starts.

But the pain of migraine goes much deeper. Even though it impacts millions across the world, this invisible disease is still widely misunderstood. By our family, friends, colleagues, doctors – sometimes even ourselves. We asked our Migraine.com Facebook community about the misconceptions they have encountered. Here is what they said.

Just a Bad Headache? No Way.

Our Migraine.com community spoke clearly: Migraine is anything but a garden-variety headache. When migraine strikes, you can feel its grip throughout your whole body. This neurological disease causes a variety of debilitating symptoms. Intense throbbing. Nausea and vomiting. Wincing at the slightest light or noise. Then there are the lesser known symptoms, like difficulty speaking and trouble regulating body temperature.

And when you live with chronic migraine, it can feel like you are losing so much of your life to the disease. On days you don’t have one, you may even find yourself consumed with trying to prevent the next attack.

“A migraine is not just a headache. It is a full body experience.”

– Migraine.com Community Member

Migraine Can Change Over Time

Tomorrow’s migraine may not be the same as today’s. Just when you think you figured it all out...BAM! Something changes.

The location, pain level, triggers – even the kind of migraine you have – can evolve over time. In fact, transitioning between episodic and chronic migraine is not uncommon. What path will your migraine take? It is not always clear. That is because migraine can be both cyclical and linear in nature.

“Every few years, something about my migraine will change. The migraines I have now are very different from the migraines I had when I was younger.”

– Migraine.com Community Member

Pain Is Personal

No two people experience migraine the same way. Things like symptoms and triggers can vary from person to person. And that includes the way we feel pain, too. Pain intensity can shift and change from one migraine to the next.

“I know someone who had a migraine.” Yeah, our Migraine.com community has heard that one before. But just because someone’s sister’s friend’s cousin had a migraine does not mean that they have any idea what a migraine is like for you.

Describing migraine pain to a person who has never had one can be a real challenge. Some people with migraine use a migraine journal with a rating scale for pain, which can be helpful for your doctor when determining how well a treatment plan is working.

“Each of us feels and deals with pain in different ways. My migraines floor me.”

– Migraine.com Community Member

Understanding the Misunderstandings

Migraine is a complex disease and there is still a lot to learn. Many misconceptions persist about migraine. Increasing awareness of this invisible illness is an important piece of the puzzle.