Most teenage girls are a little boy crazy: Did he notice me? Does he like me? Will he ask me to the prom? These questions are a bottomless pit of adolescent angst that can cause anxiety, acne and even depression. For Karen Jerabek, however, it caused migraines.
“The migraines started during my senior year in high school,” says Jerabek, now 35. “When I was under stress, especially stress from dating, I would have a series of bad migraines.”
When Jerabek, a writer and single mother of 3-year-old twins, got divorced in her 20s, her condition worsened, resulting in chronic, daily migraines. But—as is the case with many migraineurs—Jerabek’s relationships haven’t only caused migraines; they’ve also been casualties of them.
The ancillary effects that typically accompany migraines—from missing appointments to fatigue and irritability—can cause friction with co-workers, bosses, romantic partners and family members. And with chronic migraines, these negative effects aren’t just a fluke; they can happen several times a month, which means they are constantly impacting others. For many migraineurs, the social symptoms of migraines can be just as devastating as the physical ones.
“It’s frustrating,” says Judy Brown, a Nashua, N.H., resident who has suffered from chronic migraines and cluster headaches for more than 30 years. “I had my best friend tell me, ‘You’ve got to stop worrying about it, Judy. It’s all in your head.’ That really hurt.”
These types of situations can cause migraine sufferers to feel very isolated—like no one truly understands what they are going through. That’s why building a strong support system is key, according to Jack David Schim, MD, co-director of the Headache Center of Southern California in Encinitas, Calif.
“A natural response during a migraine attack is to shut down and withdraw from the world because that’s what your nervous system requires,” he says. “[Migraine sufferers] get a sense of being abandoned, which is very disruptive and very corrosive. It’s important to have backup and support among family, friends and co-workers.”
Only a Headache?!
People who suffer from migraines hear it all the time: “It’s only a headache. Can’t you just get through it?” Before migraineurs can get the support they need, they must help others truly understand what they are going through, says Mark Green, MD, director of headache and pain medicine at New York’s Mount Sinai School of Medicine. People with migraine usually get head pain, but that’s not the only issue. They also experience other symptoms, such as cognitive issues, exhaustion, nausea, and light and sound sensitivity—all of which get worse with activity.
“What that means is people tend not to be able to do anything,” Dr. Green says. “With any kind of exertion, they get worse, so they become immobilized.”
In November 2010, market research firm Harris Interactive conducted an online survey of 1,218 migraine patients and found that migraines negatively impact 94 percent of patients’ lives, forcing them to avoid, cut short or interrupt daily activities, such as chores, work and spending time with family (see “Life … Interrupted” sidebar).
This other, emotional half of the story is often the most disruptive—and the most difficult to explain to non-sufferers, says Merle Diamond, MD, managing director of the Diamond Headache Clinic in Chicago. Dr. Diamond, who also suffers from migraines, recalls missing her son’s 10th birthday party due to an attack.
“If you took 100 migraine patients and put them in a room, all of them would probably say they are still surrounded by people who are somewhat ignorant and think it’s just a headache,” she says. “It’s very traumatic.”
Portraying Your Pain
One reason non-sufferers can’t understand migraines is that many migraineurs are reluctant to talk about their condition. The Harris Interactive survey found that 41 percent of patients avoid talking about migraines with family and friends. The typical excuses: “They don’t understand how severe migraines are;” “I don’t want to burden them;” “They can’t relate to what I’m going through;” and “They don’t think it’s a serious condition.”
Although verbal communication is often lacking, it is incredibly important for migraine sufferers seeking support—especially since migraines are “invisible.”
“It’s not like diabetes or asthma,” Dr. Diamond says. “You can’t see it and you can’t really touch it, so it’s harder for people to get what it is. That means you have to explain it to them … say what you have, and don’t be embarrassed to say you have it.”
According to Dr. Green, people close to headache sufferers need to read about the biology of migraine, so they understand it’s every bit as tangible as a heart attack or stroke. Dr. Schim recommends patients bring their spouse or significant other to office appointments, so they can listen to the conversation and hear directly from the doctor that migraine is an extremely complicated condition.
But if those closest to you still struggle with sympathy, it might be time to seek professional help. Many doctors refer patients to family counselors or therapists.
“Sometimes, a spouse doesn’t see you resting in a dark room with a puke bucket next to you. They only see the end result: ‘You didn’t pick up the kids? What happened?’” Dr. Schim says. “It can be helpful to have a forum where you can be open and honest, and where you feel comfortable talking about your issues.”
Asking for Empathy
Often, the sympathy gained from open, honest communication and understanding is all the support a migraineur needs. But if words aren’t enough, don’t be afraid to let people know. For example, adult migraineurs might need a flexible schedule at work, and students might need to adjust testing schedules.
Family, friends and co-workers also can help with trigger management and treatment.
“The general principle with people with migraines is their brains don’t like change: change in stress, change in sleep, change in meals, change in fluids, etc.,” Dr. Green says. “Making sure migraineurs don’t miss meals, getting rid of things like fluorescent lights—migraineurs will function better if you meet them halfway, so it’s worth everyone’s while to remove as many triggers as possible.”
Dr. Green also asks spouses, friends and family to help migraineurs recognize when they’re getting a migraine because this can help expedite treatment. The earlier a migraine is treated, the better the outcome.
If you do have to miss important events or cancel planned activities, you can mitigate hurt feelings and damaged relationships by communicating in any way you can—e-mails or phone calls, for example—and by encouraging family and friends to be active without you, guilt-free.
“When I missed my son’s birthday party, I tried to go to dinner with him that evening so I was at least present for part of his day,” Dr. Diamond says, stressing that the party went on without her. “It’s important for your family to be able to lead their lives as normally as possible.”
Ultimately, no matter how much you compensate, not everyone will understand your condition. In that case, you might decide the stress of the relationship is no longer worth it. And that’s OK, according to migraine sufferer Judy Brown. When a member of her regular golf foursome recently confronted her about canceling too often because of migraines, she decided to leave and join a new foursome.
“If people don’t understand, maybe they’re not worth being in your life,” she says. “I changed my golf group, and now I’m much happier.”
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Life … Interrupted
A recent online survey found that migraines negatively impact 94 percent of sufferers’ lives, forcing them to avoid, cut short or interrupt the following daily activities:
- Doing chores around the home (80 percent)
- Taking part in a favorite hobby or activity (70 percent)
- Spending time with family, friends, spouses or significant others (66 percent)
- Attending work or school (38 percent)
- Starting or completing a work or school assignment (38 percent)
- Making plans or future commitments (32 percent)
- Taking a vacation (14 percent)
Source: Harris Interactive
