Get Support and Beat the Stigma of Migraine

Family members, friends, and coworkers won't always sympathize.(ISTOCKPHOTO)Sure, there's the agony inside your head, but as a migraine patient you may also suffer the much less discussed pain that comes from an absence of sympathy.

"There's a lot of shame," says Larry Newman, MD, director of the Headache Institute at St. Luke's-Roosevelt Hospital in New York City. "Their spouses are saying, 'I can't believe we aren't going out again, you have another one of those stupid headaches,' or 'You're not taking care of this family!' Or their bosses are yelling at them, 'What do you mean you are going home? It's just a headache. Take a Tylenol and stay at your desk.'"

"But you can't," says Dr. Newman. "Migraines put you to bed."

Ignorance can make it worse

It's hard enough if coworkers are unsympathetic. It's much worse when their attitude can actually worsen your attacks.

"I remember one woman always wearing this heavy perfume and she would say, 'Well I don't smell it,'" says Judy, 49, of Nashua, N.H. "She really didn't care—or didn't realize—the severity of what it could trigger in me."

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Taking care of yourself can feel like neglecting others

Judy, like many migraine veterans, worries about how the disease affects her family. As a caregiver, she feels guilty when her kids need to care for her. "My daughters are 13 and 14, and they know when I'm not feeling well. It can be really tough to hide it. They'll say, 'Mom, just go to bed, we'll take care of dinner, don't worry about it.' There's a lot of guilt that goes with that."

David Tenzer, 46, of Boulder, Colo., has worked out a coping strategy at work for his twice-weekly migraines, but his home life has suffered. "At work 95% of the time when I have a headache, nobody else knows I have one. I just power through it and do my work the way I'm supposed to. But at home, well, I don't talk a whole lot anyway, but I definitely want to talk less when I have a headache because I'm dealing with the pain. Without saying it, the attitude is 'Leave me alone, I'm powering through this.' So it has a significant impact."

Create a support network

Judy felt so alone in handling her migraines that she started a headache support group. (The National Headache Foundation has listings of support groups around the country.) She's also learned how to let go. "If things don't get done, they don't get done," she says. "It's a choice between trying to feel well and saying my house has to look absolutely perfect."