If you spend any time online, you already know that IYKYK is shorthand for a shared truth — a wink to people who’ve lived it and don’t need the backstory. But when it comes to migraines, knowing is not exactly a flex. It’s more like an unfortunate rite of passage you’d happily skip. And yet, for more than one billion people worldwide, a migraine is a regular part of life. It’s one of the most common neurological disorders, marked by intense pain and deeply disruptive symptoms, and it disproportionately affects young adults and women. Despite how widespread it is, migraines remains widely misunderstood, and often minimized, by people who’ve never experienced it firsthand.
“I often hear people say, ‘It’s just a headache,’ but that belief reflects a common stigma around migraines,” says Dr. Zarmina Mufti, a neurologist and headache specialist. “A migraine is a chronic neurologic disease, not an occasional headache. Unlike tension or sinus headaches, a migraine involves changes in brain function and sensory processing and often comes with disabling symptoms beyond pain, such as light sensitivity, nausea, and cognitive impairment.”
For people living with migraines, trying to explain all of that can feel exhausting, especially when symptoms aren’t always visible and canceling plans is often misread as flakiness or overreacting. The result? A condition that’s not only physically painful, but emotionally isolating, too.
To help break down the stigma and make these conversations a little easier, we spoke with doctors and people who experience migraines about how to explain what it’s really like to those who just don’t get it.
Here are four ways to talk about migraine in a way others can actually understand.
1. Start With What They Know, And Make It Personal
Jenn, now 36, has been experiencing migraines since she was 12. While she doesn’t know if anyone can ever truly understand what migraine headaches are like unless they’ve had one, that doesn’t stop her from trying to paint a picture for people in her life — starting with what they do know, and personalizing her experience.
“Knowing that people usually compare migraine to headaches, I typically start by saying that migraine is way more than just a headache,” she says. “I explain what migraines look like to me by being very specific in my symptoms, my triggers, and what I do to try to help myself when having them. Giving a full and clear picture [of what my migraines look and feel like] is usually helpful.”
2. Break Down The Science
Understanding the science behind migraine attacks, as well as their association with system-wide symptoms that go beyond head pain, is vital when explaining migraine to others. During a migraine, there’s dysfunction in key brain regions that regulate pain, sensory processing, and blood flow, according Dr. Rudrani Banik, MD, a double board-certified neuro-ophthalmologist, and integrative and functional medicine practitioner.
“A helpful way to explain migraines [to others] is to say, ‘A migraine is not just pain — it’s my brain and entire nervous system on overdrive,’” Banik says. “You might compare it to having the volume turned up too high on every sensory input at once. Lights are brighter, sounds are louder, smells are stronger, and even thinking can feel physically painful.”
3. Make It Relatable
Kelleigh, now in her late 30s, has been experiencing migraine for over a decade. While she’s noticed the general population has started to better understand migraines, she still has to use some creativity when explaining her condition.
“At this point, I expect everyone knows someone who has at least had one migraine, and has seen how severe they can get,” Kelleigh explains. “However, when I do run into cases where people don’t understand or suffer from migraines, I try to compare it to something they can relate to: hangovers.”
Since a lot of her symptoms mimic hangovers, including headache, nausea, and later-in-the-day dehydration, she often compares her own migraine attacks to a hangover…just without the night-before fun. While this may not work for everyone as symptoms can vary from person-to-person, it’s a helpful way to relate to something an outsider has likely experienced.
4. Hear It From The Experts
When talking to family members about migraine, Mufti suggests keeping it simple and honest.
“It helps to focus on how a migraine affects daily function and that symptoms can change quickly and become disabling due to sensory overload, where the brain becomes overly sensitive to light, sound, screens, and stimulation.”
She also recommends bringing family members or friends who may be struggling to understand your symptoms to your neurology appointments: “Hearing the explanation from a specialist often helps loved ones better understand the condition and why accommodations and flexibility are necessary.”
Presented by BDG Studios.
