“That’s OK, I have a headache too”
If you have migraine disease, you’ve probably heard your fair share of irritating comments. From questions like “Well, have you tried this…?”, to remarks like “You always have a headache”, explaining your migraine disease is not always easy. During June’s National Migraine Awareness Month, we hope to combat migraine stigma and misconceptions, so that more people will understand what you go through every day. To kick-start Migraine Awareness Month, we asked our community, “What are two things you wish people understood more about migraine?”, and they had plenty of ideas:
Not. Just. A. Headache.
“It’s not ‘just a headache’ ”
“It's a whole body experience”
“Saying ‘I have a headache, too’ does not make me feel any better”
“Migraine is a disease, not a headache”
For a person with migraine disease, the difference between a migraine and a headache is obvious. Migraine is a neurological disease, and although symptoms may include pain in the head or face, they are much more than a regular headache. Unfortunately, many non-migraineurs will incorrectly equate migraine experiences with everyday headaches, which can be very frustrating for true migraineurs. Throughout your life, you will probably hear many people comparing your migraine to headaches. However, the next time someone does, let yourself be annoyed, but then take a minute to say, “Actually, migraine is not just a headache, and I can tell you why...”
I have to “see it to believe it”!
“There are so many more symptoms than just the pain”
“I wish people would understand how painful it is and how much it affects regular functioning”
“My symptoms are real”
“That it is more than just pain. Confusion, loss of concentration, loss of words etc. The extra sensitivity to smell, light, sound, it can make you very easily agitated”
While most people associate migraine with sensitivity to light and headaches (see above), migraine disease affects every person differently. Migraine symptoms vary greatly from person to person- and they can even change from migraine to migraine. Migraine attacks can be unpredictable, debilitating, and challenging, even without questions and misconceptions from other people. As described by many of you, non-migraineurs can’t “see” your migraine symptoms (the way you can see chickenpox, or a broken arm), leading some people to be less than sympathetic. However, if you have migraine disease, you know your symptoms, and you experience them enough for everyone, so other people don’t need to “see it to believe it” too!
You think I wanted this to happen?
“It can't always be prevented”
“Stop saying ‘Oh, what caused that?’, because if I could answer that question I wouldn't be having the migraine”
“That sometimes, you have no idea what the cause of one was”
“That triggers are many and hard to avoid”
Tracking your migraine triggers and symptoms can be critical to migraine management. However, as many of you described, some triggers are impossible to avoid, and migraine attacks can be difficult to anticipate. Many community members shared experiences of people asking, “What caused your migraine?”..... Um, I don’t know? This month, we hope more and more people will become aware of the complex causes of migraine attacks, and we encourage you to talk to your friends and coworkers about limiting your migraine triggers.
My Full Time Job
“I really do everything I can to ‘get them under control’, so please don't tell me that I need to work on that”
“I work hard to be well. I don't bring migraines on myself and I am good at managing stress, so don't tell me to chill out more”
“I can't control when they happen. I'm not trying to inconvenience you”
“I'm not 'always sick'”
“I try my very best to push through it all and do the best I can manage”
In my experience, someone saying “chill out” or “relax” never made me feel very calm. For those with migraine disease, managing your illness is a full-time job, especially during a migraine attack. Especially when you hear comments like “you always have a headache”, it can be difficult when the people around you don’t understand all the work that goes into managing your migraines. If your employer or supervisor expresses concerns about your migraines, know that you are entitled to certain workplace accommodations (or even disability benefits, if you need them). However, for everyone else, remember that your migraine disease affects you first and foremost, so don’t let anyone make your illness about them. We know how hard you work to stay on top of your illness, and we encourage you to connect with your migraine community for support.
Yes, I tried that already. Yes, I’m sure.
I have already tried most "remedies"
“What works for you/someone you know may not work for me. Don’t be mad if I say it didn’t work”
“Please stop telling me that by getting my daith pierced, my migraines will disappear”
“It doesn't go away if you ‘just take a pill’!!!”
“If there was a quick fix I would have done it 30 years ago”
Between prevention medications, acute treatment medications, and over-the-counter meds, your treatment routine is probably already pretty full, even without constant suggestions for new medications and remedies. For many migraineurs, when it comes to your treatment plan, sometimes it feels like everyone had an opinion. As many of you shared, while concern is appreciated, the constant advice is not. Similarly, many community members shared how people think “popping a pill” can instantly “cure” your migraine… wouldn’t that be great?! Medications and treatment options that work for some migraineurs do not work for others, and every person responds to treatment differently. While most people mean well, the relentless suggestions can be frustrating, especially when you already know what treatment options work best for you. Remember, your migraine management is between you and your doctors, even if your niece’s boyfriend’s sister’s friend thinks that green smoothies “cure” migraines.
“Although I function under attack, I am still in pain”
“Just because I've learned to push thru doesn't mean it doesn't really hurt”
“Just because I don't look like I'm in pain, that doesn't mean that I'm not suffering”
For many of you, one of the most difficult parts of migraine disease is feeling invisible. For some migraineurs, functioning during an attack if possible, leading other people to think that you must “feel fine”, when you are really have full-blown symptoms. You know how much effort goes into pushing through a migraine or dealing with an attack, so it can be frustrating when other people dismiss your experience. If you’re feeling invisible, we encourage you to connect with your migraine community, and talk to the other people around you about how you function during a migraine attack.
All in the Family
“It affects the whole family”
“It doesn't only affect us when we have a migraine”
“It greatly affects your mind, your body and your family during and after a migraine attack”
As many of you shared, migraines affect the whole family. From disrupting schedules, interrupting outgoings, and complicating family get-togethers, migraine disease often goes beyond the diagnosed person. However, just as your family experiences your migraines, they are also able to provide love and support before, during, and after a migraine attack. In addition to strategies to less migraine’s impact on your family, be sure to communicate openly and honestly about your migraine disease, and allow your family to support you on your migraine journey.
“Migraine disease is a disease”
“It's not a mental illness”
“It's a neurological condition, there is nothing we can do to change that fact any more than someone with MS or epilepsy”
For many migraineurs, being mislabeled, misdiagnosed, or misjudged can make management all the more complicated. If you’re looking for a doctor, we encourage you to ‘shop around’ for the provider that understands you. Every year, more and more research is teaching us about the complexities of migraine disease, so don’t let anyone dismiss your experience. This month, we hope more and more people will become aware of the chronic, neurological disease that is migraine, and we hope you will share your story too.
Have you checked out the new Community Hub yet?