How do you describe to someone something they may never experience?
People living with migraine are often misunderstood, and can even be mistreated. Talking about the disease openly is central to reducing the stigma surrounding it. But sometimes, conveying exactly how migraine feels might seem an impossible feat.
Our Migraine Moment Short Film Contest winner Sharon Rody came up with an exercise to combat this, which she shared on a recent Facebook Live. She tells people to keep their arms raised in the air and doesn’t tell them when to lower them. She hopes that the pain associated with the exercise can help people begin to recognize how unbearable migraine can be. Her son has migraine and she acknowledges that she can never feel what he feels. But, she says, the least she can do is listen.
We asked our Move Against Migraine community to share exercises and analogies—like Sharon’s—that they find useful when they try to explain migraine to others.
Explain your symptoms and how they affect you personally
Behind every misconception of migraine is a lack of knowledge on its debilitating effects. Educating others on your symptoms can help them understand how difficult managing this disease really is.
“I try and explain little bits and pieces as I have attacks,” says MAM member Brianne B., discussing how to make things easier for others to understand.
For MAM member Deb, she begins by saying “[migraine] is genetic and there is no magic cure.” From there, she explains her triggers and how the “prodrome and postdrome processes contribute to how debilitating [migraine attacks] are.”
People may not understand your pain. But the feeling of letting someone down or missing an event you’ve looked forward to for reasons outside your control is universal. Explaining this to others can help mitigate these feelings.
Explain your symptoms through analogies others can understand
If you are still met with confusion, try explaining the sensations you feel in a way that others can relate to. MAM member Tom tells people that the pain is like “my head is on fire,” while Andrea writes “it’s like a severe toothache and brain freeze at the same time that doesn’t go away.” These detailed descriptions will also come in handy when explaining your symptoms to doctors.
“My left eye starts to act like I am looking through a prism kaleidoscope and with each second that goes by it is like turning the kaleidoscope until the prisms that you see are so big and so bright you can no longer see,” she says.
It may sound silly or strange, but using a relatable analogy to teach others about your migraine can help them understand what you are going through.
Talk openly about your migraine to those important to you
The World Health Organization places migraine as one of the 10 most disabling medical illnesses on the planet. So, when someone compares migraine to a common headache, it can be incredibly frustrating. MAM member India still tries to help others understand when she can.
“I have to let them see me in pain and educate them whenever I have the chance,” she says.
Having conversations about your migraine will vary drastically depending on who you talk to. Even to family, explaining the effects of migraine can be difficult. However, MAM member Cheryl found peace in confiding in those close to her. She says she talks “to those around me and explain my symptoms,” including her husband, sister, extended family, and friends. She says all of them are “understanding and supportive.”
Being open and honest about the effects of migraine—on yourself and your family—can be difficult. But it can also help to break down communication barriers and negative feelings. But always remember that, at any point, you have the right to share as much or as little as you choose. You also deserve to be heard and respected.
For more of the latest information on migraine and for tools to help start the conversation, visit the American Migraine Foundation Resource Library. For help finding a healthcare provider, check out our Find a Doctor tool.
Reviewed for accuracy by the American Migraine Foundation’s subject matter experts, headache specialists and medical advisers with deep knowledge and training in headache medicine. Click here to read about our editorial board members.