11 Women Reveal What Migraine Really Feels Like

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Most people have experienced the inconvenience and annoyance of head pain, but a special group of us know what migraine feels like. Skipping our morning coffee, stress, dehydration — any one of these may lead to that thump thump thump in the mid-afternoon or right as we’re trying to fall asleep. But the next time one strikes, proceed with caution before mumbling something like “Gosh, this migraine is driving me crazy.”

Unfortunately, migraine is a chronic condition, and one that is often misunderstood by many except those who live with it day in and day out. And the No. 1 thing they wish people knew? It’s a very different experience than that afternoon headache you may get from caffeine withdrawal. Often mistaken for a minor problem, it is in fact a neurological disorder that affects the biology of someone’s brain and how it functions. Migraine is a singular condition — instead of “migraines” — because it’s always there and not just a series of attacks.

It can be debilitating. It can be disorienting. And it may impact every aspect of a person’s life. Even when they aren’t experiencing an attack, they are worried about when the next one might hit. Here, 11 women to share what they wish everyone understood about living with migraine.

1. We hate canceling plans

“If we cancel plans at the last second, it’s not because we want to. Something better didn’t come up, we aren’t being lazy, we don’t mean to be unreliable. We want to be there. We just can’t. And it may happen pretty often.” — Sarah J.

2. Migraine can affect your entire life

“Migraine can affect your entire life. You constantly fear that a new symptom will become permanent as you stutter and slur through a conversation… It can be a lifelong [disorder].” — Robyn C.

3. We are not exaggerating

“Of course, certain triggers can make it worse or cause an episode, but attacks are not my fault, and I am not exaggerating when I describe them. They cause me severe pain, nausea, inability to find common words, inability to drive and inability to think clearly.” — Ann P.

4. We’ll do anything to avoid an attack

“I avoid things that I would probably love because of fear that my body is going to, once again, let me down.” — Jena L.

5. Migraine is mentally and physically exhausting

“I’m not making my symptoms more dramatic than they are. I genuinely feel mentally and physically exhausted before, during and after an attack.” — Wendy C.

6. Migraine takes up a lot of time — too much time

“I get overwhelmed when I think of how much of my life I’ve lost to migraine. Hours and hours laying in bed, in a dark room, waiting desperately for the pain to stop. Added up, it must be years.” — Lisa P.

7. Sometimes you know one is coming — even if you don’t have it yet

“I experience aura, so I get about 45 minutes warning. Sometimes I sob during the aura because I know what’s coming in less than an hour.” — Michelle F.

8. It can take days to recover

“Oftentimes, migraine attacks are a process. I can feel one coming, but not being able to stop it, I hurry to get what I need done before it hits me (work, child care, canceling plans). It can last hours or days, and then I may need anywhere from one to three more days to fully recover.” — Kim B.

9. Attacks are scary

“I’m scared. Scared to drive my car, scared it will affect my career, scared the pain will never stop. You may think I am weak, but I’m not. I’m fighting harder than you can imagine every day just to be here.” — Sue P.

10. Everyone experiences migraine differently

“Each person has a different experience, different symptoms, different things that are hard for them, different things that help. But sometimes we’re all thrown together into one big bin under the same diagnosis. Don’t assume that because you know someone with migraine, or because you yourself have migraine, that you know exactly what a different person’s experience will be like.” — Sam B.

11. It’s a whole-body experience

“There are a lot of other symptoms besides just head pain, such as nausea, exhaustion, light and sound becoming painful, visual distortions like flashing and spots, and even slurring of speech. The pain is also much worse than people imagine.” —Lola P.