26 Things People With Migraine Want You to Learn During Migraine Awareness Month

June is Migraine Awareness Month, and those with migraine are especially determined to increase understanding of this neurological disease. Although studies have found that migraine is the third most common illness in the world, there are still many misconceptions surrounding the condition. Some may think a migraine is “just a bad headache,” not realizing it can actually produce a variety of other symptoms, such as dizziness, nausea or numbness. Others may not understand just how debilitating migraines can be, or how they can affect nearly every aspect of your life. When the people around you are misinformed, they might make comments that are judgmental, hurtful, or just plain frustrating.

So, in partnership with The Daily Migraine, we asked their community as well as our Mighty community to share what they want others to understand during Migraine Awareness Month. If you have a friend or loved one with migraine, maybe the following will give you a better idea of what their life is like with this condition. Regardless of whatever shape or form a migraine may take, everyone is deserving of compassion and understanding.

Here’s what the communities shared with us:

1. “Migraines are more than just ‘a headache.’ Migraine research is now referring to migraines as a brain disease and I believe this is appropriate. Chronic migraine has changed every aspect of my life. It’s more than pain. It’s being tired beyond measure, it’s vomiting and being dizzy, it’s my ears filling so full they could explode, it’s depression from not knowing when the next one will hit or what it even feels like to not have a migraine anymore. It’s debilitating.”

2. “We deserve to be taken seriously, whether it’s friends, family, work, doctors, the ER… If we say we can’t eat something or be around something because it triggers symptoms, believe us.”

3. “There are many triggers we just can’t avoid, like weather, other people’s choices (hello, secondhand smoke) and stress. Nobody wants to have a migraine.”

4. “Just because I’m out doing things, working, having fun… doesn’t mean I’m not in pain. It means I refuse to lose my entire life to this condition. I will do my best to enjoy as much of my life as I possibly can!”

5. “I wish people wouldn’t judge me for having migraines and how I choose to treat my migraines.”

6. “Taking a few Advil or Tylenol isn’t going to help. Neither is that over-the-counter stuff. Sometimes my prescription meds can’t even help.”

7. “Not all migraines are the same. I get them in my head, my ears, my neck. I feel like I have an ear infection because everything hurts.”

8. “I wish it was better known that even children can have migraines. I never understood as a teenager why every time it rained, I’d get a ‘headache’… Flash forward a bit, my daughter (who is now 12) gets ‘headaches’ every time it rains and has already been diagnosed with having migraines since she was 8. Kids do have migraines, you just have to figure out if it’s really ‘just a headache’ or a migraine. I wish I’d been listened to.”

9. “I can still function with a headache, but with a migraine? Forget it. It is so painful, lasting anywhere from a couple hours to days at a time.”

10. “[A migraine] can happen literally [in the] blink of an eye. It comes out of nowhere, full on debilitating. If the light hits my eye the wrong way, boom – instant migraine.”

11. “They affect your appetite. They hurt so bad, I don’t want to eat. I don’t care that I haven’t [eaten] all day, I don’t have an appetite. Also, they zap my energy. Even if it passes, I’m going to be out of energy for the day.”

12. “[I want people to know] that yes, I’ve tried that (i.e. Advil, yoga, chiropractic adjustment, essential oils, etc.). Yes, the pain is constant and very real, and yes, this aggressive treatment is necessary. The dangers of a certain protocol have been weighed against the benefit by me and my doctor and I wouldn’t be doing it if I wasn’t desperate for relief.”

 

13. “Life completely stops. I can’t eat, can’t sit up, can’t have any light, sound or smell and can’t even get to a doctor when one is in full swing.”

14. “Auras before a migraine are not just seeing or hearing strange things. I lose the ability to speak correctly (aphasia) and I can hear sounds but don’t comprehend them. I feel like I am in the Matrix… everything is moving around me and I am standing still.”

15. “A migraine isn’t just me being lazy and not coming to work. I’m not ‘faking’ it – I’m genuinely sick. I can’t see, I can barely breathe, I’m throwing up every five minutes and even moving a tiny amount sends shockwaves of pain through me. I want to come to work and be OK. It’s not a ‘day off.’”

16. “Just because you can’t see it on the outside doesn’t mean it’s not very real on the inside.”

17. “Migraines can have awful ‘after effects’ hours (and sometimes days) after we’ve stopped throwing up or had a headache, and our brains can be pretty fuzzy.”

18. “I wish doctors would treat us as individuals and not like a textbook case. Listen to our complaints, listen to our symptoms. Don’t dismiss them. It’s my body; I know what I experience.”

19. “Some people do not ‘grow out of them.’ I hate when people say, ‘Oh, you still get those?’”

20. “I want people to know that migraines impact every single aspect of your life…your family, your relationships, your career, your friends, etc. And, when we have to go to the ER, we want to be treated with respect.”

21. “Migraines affect my brain function and have some of the same symptoms as a stroke, such as loss of speech and numbness from my face to my toes. So no, I can’t just work through it.”

22. “When I make plans, I’m constantly worried I’ll have to cancel due to the fact I can’t keep my eyes open or stand up or eat because every movement I make makes it worse. I’m not canceling on you because ‘I’m not feeling it anymore.’ I am literally in so much pain.”

23. “It affects not only our head but our emotions, including feelings of guilt, anxiety over everything, [worry about] how we should do something so it doesn’t trigger a migraine and depression.”

24. “They can affect your vision hours before the pain of the migraine even starts. The vision changes are my biggest first warning that one is coming.”

25. “I hate missing out on things and spending hours or days inside or even in bed due to a migraine when nothing helps. I want nothing more [than] to make plans ahead of time and be able to keep them for once.”

26. “Most people think you ‘get migraines,’ which is the name for a really bad headache. Actually, you ‘have migraine,’ which is the name of a neurological disorder that causes the brain to malfunction.”