One reason migraine is isolating is because it’s difficult for others to understand. They can probably imagine a “headache,” even a really bad one. But few people know that migraine management is a full-time job that never stops. They don’t realize the way your days may be built around the fluctuating demands of your illness. That lack of understanding is frustrating, even depressing, so if you’ve felt that way, you’re not alone: One global study discovered that “being misunderstood” was reported as the top difficulty of living with migraine.
Here are three useful ways to help you describe life with migraine, to allow people a greater peek into your reality.
“Spoon Theory” was the brainchild of a woman named Christine Miserandino, who was explaining her own chronic illness to a friend while they sat at a diner, and grabbed the only visual aid nearby: a dozen spoons. This method of explaining the wall-to-wall nature of illness has become gospel to people with all types of chronic illness and pain, who call themselves “Spoonies.”
- Hand your friend 12 spoons. Then walk them through the following scenario, personalizing it with own experience:
- Imagine your 12 spoons represent the total amount of energy you have to spend all day. Healthy people expect an unlimited supply of “spoons,” but being sick means having to carefully plan how to dole out your energy. Once those 12 spoons are gone for the day, there are no more.
- Now imagine your task list for the day. Each task will cost a spoon. Walking the dog? Take away a spoon. Showering and dressing for work? That might be a spoon. Readying the kids for school? Spoon. Notice that’s three spoons gone already — a quarter of the day’s energy — and the day has barely begun. Don’t forget to alert your friend to the finer details that are also costly, like skipping lunch, standing on a train, or typing too long on your computer.
Can you picture it? The details of your own story will differ, and some days start out with more spoons than others, but the metaphor is the same: Being judicious in the way we parcel out pieces of ourselves is a core part of life with migraine.
Christine later wrote that by the end of her spoons exercise, as her friend found herself deciding how to allocate her final spoons — having to choose between running an errand, or making dinner — she’d finally got true insight into Christine’s daily struggles. The understanding deepened their friendship. And it made her all the more appreciative of how special it was when Christine set aside a precious “spoon” for her.
If any well-meaning person has ever asked you, “What sets off your migraines?” you’ll want to have this explanation handy. “Bucket theory” is an easy visual to describe how migraine attacks happen: not as the result of a single “trigger” (as is generally misunderstood) but from a buildup of triggers that overwhelm our systems. Try this:
- Imagine an empty bucket. That’s you feeling great, at your farthest from a migraine attack.
- Now imagine that every trigger you encounter is a drop of water falling into the bucket. Lack of sleep could be a drop into the bucket. Loud noise could be a drop. Dehydration, bright lights, your menstrual cycle, stress — some drops may be the size of a tablespoon, others could fill a mason jar, but they all go into the bucket, raising the water level little by little.
- The higher the water level, the closer you are to a migraine attack.
- A migraine attack begins when the bucket finally overflows.
Bucket theory is a good way to describe the complex factors involved in migraine, and how even though it may look as though that glass of wine/chocolate bar/Zumba class you had right before your attack is to blame, it’s not that simple.
Your well-meaning friend may then ask: Does that mean you should avoid all those triggers, so you don’t fill your bucket? Au contraire! Trigger avoidance strategies generally don’t work. Instead, the best prevention strategy is to drain water out of your bucket (picture a spigot here) by taking steps toward your core health: getting good sleep, exercise, nutrition and stress management, all of which builds up your migraine resistance. Which brings us to one last metaphor.
This explanation focuses on how your level of migraine resistance can protect you from attacks — and how you can raise that level so that you’re even more resistant to attacks. It’s a great way to explain to people (and, perhaps, to yourself) why self-care activities are such an important part of migraine management. “Threshold theory” is a favorite metaphor of the Jefferson Headache Center for its emphasis on the affirmative, productive steps a person can take to prevent migraines. It goes like this:
- Everyone has a certain level of vulnerability to migraine, their “threshold.” It’s your own internal boundary line where, if you’re pushed over that limit, you’re likely to have an attack.
- If you have a low threshold, you’re very vulnerable to having a migraine, and even slight variations in your environment threaten to put you over the limit, like a change in barometric pressure, or a strong smell.
- If your threshold is high, you’re less vulnerable to such changes and can withstand a lot more stimulation before being pushed into a migraine attack.
- You can raise your threshold by engaging in activities that boost your core health: good sleep, exercise, nutrition and stress management. Literally anything you do in any of those realms will work to raise your threshold to a higher level of migraine protection.
The people in your life care about you. It’s nice to be able to reassure them that while your illness is complex and unpredictable, there are certain things within your control, and that they can become partners in your good health by encouraging self-care. Better yet, resolve to take on a healthy habit together, and make raising your threshold a team effort.