For years, Shannon Malone-deBenedictis lived with severe migraine. “The pain was so intense that it would radiate through my ear and affect my hearing,” Malone-deBenedictis, 55, who lives in Alexandria, Virginia, recalls. “Some days, the discomfort was so bad I’d spend the day vomiting in bed.”
Unfortunately, Malone-deBenedictis had a very demanding work schedule that required frequent travel. When she showed up for a business conference during a two-week migraine, “my clients were alarmed at how bad I looked,” she recalls. “I had deep bags under my eyes, and my skin was gray.”
Over the years, she’s also had to miss many social events, including one of her best friends’ weddings. “People truly don’t understand what you’re going through,” says Malone-deBenedictis. “They think it’s just a headache that will go away if you take Tylenol. But when my pain was at its worst, there wasn’t enough medicine to knock it out. I needed to crawl into bed and stay there until I recovered.”
Migraine affects over 37 million people in the U.S., and more than 90% of them say it affects their work, school, and social activities. But patients who get them often feel like their condition is dismissed. “Migraine is seen as just a bad headache that occasionally comes and goes, when in reality it’s this overarching neurological condition that affects your brain and body all of the time,” says Emily Kostelnik, PhD, a psychologist in Marlton, New Jersey, who also experiences migraine.
But there are ways to explain your migraine to others, she stresses.
Here are some “scripts” to help you manage various situations:
Script: “Unfortunately, I have a migraine headache today, so I need to cancel. I’m so appreciative that you invited me, and I feel bad that I can’t make it. Unfortunately, migraine is something that I always live with, and I occasionally experience flares that make it hard for me to function in everyday life. Your friendship is very important to me, and I’d still like to always be included in your plans in the future.”
When it comes to discussing migraine, “you can explain as little, or as much as you want,” says Kostelnik. “Oftentimes, patients tend to overexplain, because they want people to understand. There’s this real worry that others won’t believe them, or they’ll stop inviting them to things. Most of the time, people get it, and appreciate your honesty.”
Script: “I’d love to, but doing x often triggers a migraine attack for me. I really want to see you and spend time with you. Can we do y instead?”
One good part about this scenario is that it’s one where you have a fair amount of control, notes Kostelnik. “You could compromise: For example, if a group is going out to dinner, and then to a club, you could meet them for the meal and then skip the second part and explain your head can’t handle strobe lights, music, and drinking,” she advises. You can also suggest another activity. Or you can decline, but follow up with an invitation for them to go to a migraine-friendly event of your choice.
Script: “Today’s a tough migraine day. I’m still here, but I need you to do x, y, and z to help me out.”
Don’t be afraid to be honest about the pain that you’re experiencing, and spell out what you need, says Kostelnik. “When you have a migraine, it’s easy to assume other people see how uncomfortable you are and will know what to do to step in,” she explains. “But migraines are invisible, so they may not automatically realize how poorly you feel.”
It’s helpful sometimes to have notes written up in advance, she adds. That way, if your partner needs to step in, for example, to make dinner and bathe the kids, they know exactly what to do. Or they know that if they come home and you’re in the throes of a migraine attack, they bring you your medication, a cold compress, and keep the lights dimmed and the noise to a minimum.
Script: “I live with migraine, and I can feel an attack coming on. I was definitely looking forward to seeing you, but I’m going to be in too much pain to enjoy our date. Can we reschedule?”
Before you cancel, you could take your medication and see if it helps at all, suggests Kostelnik. Eat a well-balanced snack that has carbs, protein, and fiber. Also, stay hydrated. But if it seems like your migraine will worsen, then call and try rescheduling.
This happened several times to Malone-deBenedictis before she got married, when she was single. “I’d try to push through a date, but sometimes the pain was just too overwhelming,” she recalls. “Then I’d have to ask my date to take care of me, or at least make sure I got home OK, which felt weird.” But thankfully, most of the men she was with understood. “The ones who didn’t, I saw it as a red flag, and I moved one,” she says.
It often drives Malone-deBenedictis nuts when people offer her advice on her migraine. “They suggest I eat right, and exercise, or do acupuncture — I want to shake them and say, ‘Don’t you think I’ve already tried that?’” she says. “I’ve also been told to just push through it, with the implication being that it’s just a headache and I should be able to pop some pain medicine and move on.”
Here are some ways to explain your migraine to others when you get a dismissive comment — whether it’s family, friends, or employers:
With these comments, Kostelnik suggests that you explain that migraine is a complex neurological condition. “Take a few minutes to really explain symptoms that go beyond head pain: light and sound sensitivity, changes in vision, or even weakness on one side of your body,” she stresses.
When you share your experience, use “I” language: “I’ve managed my migraines for years, and there are times I need to lie in a dark, quiet room to avoid an attack.” This will help someone understand your reality.
Migraine is often an invisible disease, says Kostelnik. You’re not in a walker or a wheelchair, and you don’t have signs of sickness, such as a runny nose or a cough. As a result, people may not realize how awful you truly feel.
Malone-deBenedictis suggests that you explain how migraine interferes with your daily activities. “I often describe it to people as pain so blinding that you can’t do anything that requires you to focus, like driving a car,” she explains.
Migraine is a complex neurological condition, and what works for one person may not help you or may even make your migraine worse, points out Kostelnik. It may help to explain to them what triggers your migraine (for example, strong perfume) and what doesn’t.
There are other ways to have conversations about migraine, too. Here are a few things to keep in mind:
This includes a few sentences that explain what migraine is and how it affects you personally. Describe symptoms, how long they can last (for example, days), and what often triggers them.
Share how migraine affects you and how it can make daily activities challenging. If your conversation is with an employer or a friend, include specific information on how migraine affects you at work or in your social life.
When it comes to work or school, you have certain protections under the Americans with Disabilities Act. Bring a letter from your doctor that states your migraine diagnosis, as well as any reasonable school or work accommodations you might need (for example, take regular breaks, enforce a fragrance-free office, and turn off overhead lights). Also, prepare a couple of sentences on how you expect to make up work if you need to take time off for a migraine attack.