“Don’t bother Mommy—she has a headache.”
I can’t count how many times I’ve overheard my husband say those words to our three kids, diverting their attention as I retreat to a darkened bedroom to sleep off excruciating migraine pain. When my sons were little, this simple and honest approach was the best.
As they got older, though, that explanation raised more questions than it answered. My kids wanted to know why I had a headache, why I needed to lie down, and how long it would take for me to feel better and go back to being “Mommy” again.
I realized I needed to have a conversation with my kids about what a migraine is and how it isn’t actually just a headache—it’s a whole body event that might, sometimes, affect our family’s day-to-day life. But sitting down for that conversation was harder than I thought it would be; I felt responsible for my migraines, anxious about worrying my kids too much, and guilty about asking for their help.
According to Deborah I. Friedman, M.D., professor of neurology at the University of Texas (UT) Southwestern Medical Center and a member of the American Headache Society, these are all normal concerns. In fact, many people don’t open up to their families about migraines because it’s such a difficult condition to understand.
“There’s a lot of stigma about it,” says Dr. Friedman. “People think it’s just a headache because it’s hard for anybody who doesn’t have migraines to realize what they’re really like.”
If you’ve decided it’s time to talk with your loved ones, you’re probably wondering how exactly to go about it. Psychiatrist Richard Robinson, Ph.D., who works with Dr. Friedman at UT and specializes in pain intervention, says the attitude with which you initiate the conversation is critical: “Start from a position of assuming your loved one wants to help you, just like you would want to help them…you’ll be presenting your point of view in a less defensive way.”
Beyond that, there are a few other things to consider when preparing to talk to your family:
Choose your timing
Don’t wait until you have a migraine to initiate the discussion, says Dr. Friedman. “It takes a calm conversation, not during an attack, because pain makes everything worse and you might say things you don’t mean or misunderstand what others are saying,” she explains.
Any pain-free time is fine, but I found that it was easier to talk to my kids about migraines in the first few hours after an episode ended because it was still fresh in their minds.
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Explain what they can expect
When talking to your loved ones, describe how you might react to a migraine in the moment. Will you look like you’re in pain? Will you need to lie down? Will you need your family members to speak quietly or keep the TV volume low?
There’s also value in discussing how certain prescription medications for migraine might have a long-term effect on your behavior, says Dr. Friedman. Beta blockers (like propranolol) and tricyclic antidepressants (like nortriptyline or amitriptyline) may sap your energy or alter your mood. Topiramate, an antiepileptic drug often prescribed for migraine, can cause side effects ranging from weight loss and mood changes to cognitive impairments like memory loss.
I tried taking topiramate, but ended up excessively fatigued and mildly depressed. It wasn’t until my husband called attention to those behavior changes that I realized topiramate was the cause, so having a family member look out for adverse medication effects can be valuable.
Be specific about what you need
Robinson says people often feel helpless in the face of their loved one’s pain and without specific guidance on how they can help, they may shut down to avoid their own discomfort.
“Sometimes people just want to be listened to without the problem being ‘fixed,’ while other times they need to be reassured they’re not doing a bad job as a spouse or parent,” he explains, adding that it will be different for each individual.
To help your family members help you, try giving them easy assignments. Dr. Friedman says a partner can bring you water or draw the curtains during an episode, or assist you with your regular prescription medication—even going so far as administering injections like calcitonin gene-related peptides (CGRPs) if you’re squeamish about needles.
Don’t forget your emotional health
Although migraine pain is often physically agonizing, the effects on your emotional well-being can also be crippling. Vocalizing your stress to your family is vital to having healthy relationships in spite of your pain.
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Dr. Friedman says people with migraine usually feel guilty about missing out on family activities, both small (like birthday parties) and large (like weddings). She adds there’s also an element of anxiety to migraine, because of the unpredictability of attacks, and often one of personal fault or blame. All of these emotional concerns can benefit from open dialogue.
Bring in a professional
Finally, Dr. Friedman and Robinson both agree that sometimes an outside perspective is needed to “convince” a family member that migraine pain is real—and that you need their support. You may want to include your neurologist in the discussion to validate for your partner what you’re going through.
Robinson adds that when a partner receives guidance from a health provider about the effects of migraine, they often become more sympathetic to their loved one’s experience.
“[Those conversations] can ‘normalize’ migraine, so to speak, and even instill hope for your partner that there is life outside of migraine,” he says.