Migraine is stigmatized and so misunderstood. Sometimes, even well-meaning advice can be hurtful.
At the start of 2015, I woke up with head pain that never went away.
A few months later, I was diagnosed with chronic migraine and have spent the last 7 years trying to manage this debilitating condition in the best way I can.
Migraine flipped my life upside down. I know first-hand how devastating of an impact it can have on every aspect of your life. Migraine is stigmatized and so misunderstood.
What people without migraine often can’t see is that those who are living with migraine are likely already putting on a brave face and downplaying their symptoms. It’s important for people who don’t live with migraine to be mindful of how they speak with people who are living with migraine.
Sometimes, even well-meaning advice can be hurtful.
Here’s my guide to the seven things I wish people would stop saying to me about migraine and what I wish they would say instead.
When migraine is compared to common headaches, it can minimize the chronic experience of living with migraine. Often, comments like this come from a lack of education and awareness around what migraine actually is.
Migraine is a complex neurological disease and so much more than “just a headache”.
There are four stages of a typical migraine attack, though not everyone experiences all four.
It’s important to remember that migraine doesn’t just affect your head. An attack can impact the whole body. The attack stage is when people most commonly experience severe and debilitating head pain.
There are several subtypes of migraine, such as silent, hemiplegic, and vestibular migraine, that cause different symptoms. With some types of migraine, head pain doesn’t accompany an attack at all.
“I’ve been reading about migraine and had no idea it impacts the whole body. What symptoms do you typically experience with your attacks?”
This is one of the most frustrating things you can hear as someone living with migraine.
Migraine is not a psychological condition caused by stress. It’s a neurological disorder that can be caused by genetic and environmental factors.
While stress is a common trigger for some people living with migraine, triggers are highly individual and should not be confused with being the “cause” of migraine.
Living with a chronic condition that doesn’t have a cure is stressful on its own. Please don’t contribute to this by telling us we are just stressed.
“How can I help take some pressure off you?”
Yes. Yes, we are.
Like stress, dehydration is a trigger for some people living with migraine, but not for everyone. Research suggests that, rather than a singular trigger causing a migraine attack, different triggers compound before reaching the threshold to cause a migraine attack.
It’s unlikely that dehydration alone would trigger an attack. Most people living with migraine are drinking enough water.
Asking someone with migraine if they’re drinking enough water minimizes the complexity of the condition. If only addressing migraine was as simple as drinking a bit more water.
Migraine is not the same as a typical dehydration headache. You can’t just drink some water and take a few painkillers to feel better.
“Can I get you anything to drink? Or is there anything I can get you that would make you feel more comfortable?”
Please don’t add to pill-shaming.
People living with migraine, like people living with many other chronic conditions, may try to take medication privately because they feel embarrassed or ashamed.
We don’t want to have to take so much medication.
It’s important to note that many of us with migraine, especially those of us with chronic migraine, are medicating to attain a more manageable level of pain where we can just get through the day.
People with migraine are often limited to how frequently we can take acute treatment medications. We typically need to be selective about which attacks to treat and which to get through without acute treatment.
We are also navigating the added stress of trying to catch an attack early enough to treat it effectively. There’s already so much anxiety around medication for people living with migraine (Will I get my prescription in time? Will this medication work? Will there be side effects?), so please don’t add to the pressure.
“Can I pick up your prescription from the pharmacy for you?”
OK, thumbs up. Now what?
Being told we just need to “think positive” implies there’s a psychosomatic element to migraine.
So many of us believe in the good: We have a positive mental attitude, we see the glass half full, yet we are still debilitated by migraine.
Migraine can’t be “fixed” by thinking positively — it just doesn’t work like that. It’s also exhausting to try to stay positive every day. If we are experiencing an attack, please allow us the space to feel frustrated and annoyed.
“It must be so difficult to stay positive. You’re doing a fantastic job. If you ever want to talk about how you’re feeling or just want to vent, I’m here for you.”
Trust us, nobody is more fed up or frustrated that we’re still sick than we are.
When you say the word “still,” we hear, “STILL? Surely not? You must be doing something wrong. How on Earth are you not better yet?”
Migraine is a chronic condition. We live with it every day, even when we are not in the middle of an active attack. It’s an unending disease that takes constant management. We’re trying our best.
“I’m sorry to hear you’re having a hard time at the moment. I can see how debilitating it is for you. Is there anything I can do to help?”
Most of the time, people mean well when they offer suggestions to get rid of migraine. However, the constant stream of unsolicited advice becomes really draining. It also contributes to minimizing the complexity of migraine.
It makes us feel like migraine should be easy to fix, when that’s so far from the truth. Treatment and management of migraine is distinctly individual. What works for one person won’t necessarily work for someone else.
Treating migraine involves a lot of trial and error in order to find out what works for you. It often takes a combination of medical treatment, lifestyle interventions, and trigger management to find the combination that works for you. Everyone’s treatment plan will look different — and that’s OK.
“What treatments are you trying at the moment? How are you finding them?”
Living with chronic migraine can be debilitating and isolating. Navigating the daily challenges of migraine can be made even more difficult when you also have to contend with others who don’t understand what you’re going through.
While some advice or comments may be well-meaning, they’re often out-of-touch, insensitive, or even hurtful. It’s important to remember that no two people experience migraine in the same way.
Making assumptions about how someone is managing their health can minimize their experience and add to the stigma surrounding migraine.