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.”
3 GREAT RESOURCES FOR NON-SUFFERERS
If you’ re looking for a way to help your friends and family understand your condition, these three resources can help.
A Guided Tour of Hell: In the Words of Migraine Sufferers, by Kristine Hatak: This revealing book presents a compilation of descriptive quotes— ranging from the frustrated to the humorous— designed to translate the migraine experience for non-sufferers.
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Migraine Notebook: This free app— available for Apple’ s iPhone, iPad and iPod Touch— was created by the National Headache Foundation and GlaxoSmithKline. It allows you to keep track of your triggers, treatments, and symptoms and gives you a written record you can share with non-sufferers.
Life and Migraine, a 2005 documentary by Edmund Messina, MD: Life and Migraine chronicles 13 migraine sufferers, who recount their experiences with friends, family, co-workers and medical professionals.
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
28 HEAD WISE | Volume 1, Issue 2 • 2011