Migraine Sufferers Appreciate Support More Than Advice

Woman With Migraine

Source: Pavel Danilyuk/Pexels

The other day, I was a passenger in the car when we pulled up to the drive-thru. I noticed the woman in the window taking our order was looking at me strangely. It was then I realized, embarrassed, that I was wearing my Cefaly device (on my forehead), which must have, indeed, looked odd.

It wasn’t the look on her face that surprised and angered me, but rather what she said after I told her it was a treatment for migraine. She quickly and flippantly responded, “That can’t be any real treatment. Why don’t you just take a couple of ibuprofen or Tylenol?" I did not know how to respond to that.

We’ve all read the articles with titles something like, “10 Things Never to Say to Someone with Migraine” or “The 10 Worst Pieces of Advice You Have Received When You Have Declared You Are Suffering from a Migraine.” I’ve read many of them, and they all ring true. They leave us feeling lonely, misunderstood, invisible, and stigmatized. What people who suffer migraine want is understanding, respect, and support.

Well-meaning friends, family, co-workers, and acquaintances like to suggest remedies, treatments, and preventive measures to migraine sufferers in their lives. It’s so human to want to offer solutions when someone you care about is in pain.

Trust me, though, if you are talking to a migraine sufferer, particularly one who has lived with the disease for a long time, we have tried just about everything and anything we can. In fact, we spend a good share of our lives seeking new treatments, whether they be prescription medications, alternative treatments, devices, home remedies, and/or assistance for the psychological aspects of the disease.

In a recent article in Self magazine, writer Katy Mersmann points to Dr Jessica Ailani, a neurologist and Director of the Medstar Georgetown Headache Center in Washington, DC, who lists some of the frequent suggestions she’s heard others recommend: “Special salts, a particular ear piercing, ginger, and even stopping all medication. These were all things I’ve heard or read online, too," she says.

Typical advice given to migraine sufferers includes:

• Take over-the-counter painkillers
• Drink a soda. (While both pain relievers and caffeinated drinks can sometimes help with migraine, most migraine sufferers already know about and use them frequently.)
• Try Excedrin-Migraine
• Draw a hot bath
• Take a shower with cold water
• Try medicinal tea
• Lie down for a nap (even though it’s often impossible to sleep in the throes of migraine)
• Take a walk or enjoy some other means of relaxing
• Drink more caffeine
• Drink less caffeine
• Drink one glass of white wine
• Take a course to distract yourself
• Read a book (even though we can’t focus, concentrate, or, literally, read)

You get the idea.

“A lot of these comments come from this lack of understanding about what it means to have a chronic illness and what the experience of having migraines is like,” says Dr. Kelly Dunn, a licensed clinical professional counselor in Chicago.

Instead, Mersmann gives this advice: “If someone in your life has chronic illness, ask questions, ask how you can best support them … Migraine can be highly variable, and everyone experiences it in their own way. Regardless, it’s almost never 'just a headache' — there’s much more happening under the surface."

So, what do migraine sufferers need?

• Compassion
• Education
• Empathy
• Support

Long-time patient advocate Teri Robert reminds us: “There’s only so much we can do. Some people simply aren’t giving enough to learn about migraine and its impact. They’re either open and giving enough to learn, or they’re not. And, that’s not on us … Our situations living with migraine can have a huge emotional impact on us. That makes it difficult for many of us to try to explain migraine and its impact without becoming emotional. That, in turn, can make it more difficult for less emotional people to really hear."

We know that migraine, for most people, is a largely misunderstood and stigmatized disease. The reasons for these truths are many. According to a study in Neurological Science, “There is a stigma around migraine in our society, which seems to be more prevalent in patients with certain socio-demographic characteristics, and that is related to stress, mood alterations, and low self-esteem. Trying to reduce stigma could contribute to improve the control of migraine and reduce the impact of the disease at a socio-economic level."

Interestingly and encouragingly, though, our neurologists and headache specialists largely do have compassion, empathy, and support: “Studies have shown stigma against patients suffering from migraine, but no studies currently exist looking at neurology provider viewpoints towards patients with migraine. This study aimed to understand whether stigma exists among non-headache certified neurologists as well as understand other perceptions of patients which may have treatment implications … Almost 82% of respondents reported that they view treating migraine patients is challenging, whereas 67% of respondents reported that they feel migraine patients drain them emotionally. 51.5% of respondents had experienced a migraine themselves” (Zubair, et al).

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How to reduce stigma and better support migraine patients

• Ask if there is anything you can do to make their lives easier that day?
• Offer to adjust light and sound and smells.
• Be patient when they have to cancel plans, even if it’s fairly often. Keep asking!
• Make a donation to Migraine Research in their name.
• Make a meal.
• Go with them to the doctor. Ask questions. Mention symptoms you notice or medication side effects that concern you.
• Learn that a migraine attack goes through four phases, all with indefinite periods of duration, all of which can be circuitous.

Maia Sepp's wonderful novel, The Migraine Mafia, has a scene with a migraine sufferer in the early stages of an attack. She tries to make small talk in the kitchen with her sister-in-law, who has always remained oblivious to the severity of her migraines and now declares:

"'I have a friend at work who used to have migraines ... He's totally fixed now! I could get the names of his neurologist.'

I try not to sigh. 'Sure.'" (Sepp 134).