Millions of people live with a health condition that can’t be seen with the eye. One of them is migraine — a neurologic condition that causes crippling pain and other serious symptoms that are often known only to those living with it.
Along with managing migraine symptoms, you may also struggle to deal with stigma and myths surrounding the condition. But there are ways to make an “invisible illness” more visible.
How Living With ‘Invisible’ Migraine Can Affect You
Doctors formally diagnosed Emily Kostelnik of Mount Laurel, New Jersey, with vestibular migraine in 2019. But looking back, she recalls signs of the condition, such as motion sickness, as early as 6 years old. Unlike traditional migraines, vestibular migraine doesn’t always come with a headache. Instead, it causes dizziness, vertigo, nausea, brain fog, and imbalance, which is confusing for some to understand and adds to the “invisibility” of the condition.
“If you’re in a wheelchair or on crutches or you have a cast, someone can identify that as an illness,” Kostelnik says. “But when it’s something like migraine, it doesn’t show up on your body, so people assume because you look okay, you must feel OK.”
Kostelnik also explains that people may not grasp the chronic nature of migraine. “For someone who’s only ever had an acute illness that was quickly identified and treated by a doctor, they have a hard time understanding that, yes, I'm still living with migraine.”
Beyond the physical toll of living with an invisible illness, there are serious impacts on mental and emotional health. Studies show that anxiety and depression are common among people with this type of condition. You may feel mentally exhausted from advocating for yourself while dealing with identity changes and the grief of activities you can no longer pursue.
Having an invisible illness, such as migraine, makes it harder to go about your day-to-day life. There’s the extra effort it takes to manage triggers, medications, diet, and exercise on top of your normal family, social, and work commitments. You have to explain why you’re late with or can’t finish school assignments or work duties. And people question why you don’t look sick, calling you lazy or telling you to “deal with” the pain and other symptoms.
People with chronic health conditions sometimes use the “spoon theory” to explain how an invisible illness affects their lives. The theory uses spoons to represent the amount of energy you have for everyday tasks. For example, imagine you have 10 spoons that you use for tasks such as cleaning, going to work, and childcare. Usually, one task might cost one spoon, but for someone with migraine or another illness, the cost is much higher. And you must more carefully balance how you use your spoons (energy) for the rest of the day.
“People who live with migraine are constantly calculating: How much energy do I have, what are my triggers, what can I negotiate today?” Kostelnik says.
How to Help Others See Your Migraine
The first step in helping others to understand your condition is deciding whom to tell. Don’t feel obligated to explain to everyone; only share with those who need to know and who show compassion and support.
Then, consider how to describe migraine simply and clearly. For example, you could say it’s a brain and nervous system disorder that’s with you all the time. And, certain triggers, such as stress or lack of sleep, can cause an intense headache and other symptoms that they may not see.
Share specific ways that your loved ones can help you manage the condition, such as driving you to doctor’s appointments, giving you space to lie down in a dark room for a few hours, or bringing you food. Also, keep in mind that although migraine can lack visible signs, the people in your life may notice more than you think.
“My migraine patients describe that sometimes they feel like they’re hiding their migraine, but their loved ones will point out some behavior that they aren’t even aware that they’re doing,” says Sheila Anderson, a physician assistant with Wilmington Health Neurology in North Carolina. “People who have never experienced a headache often have compassion for a person with migraine. It’s more understood and respected than people realize.”
Advocating for Yourself
Research shows that people with invisible conditions often hesitate to talk about them at work due to fears of losing career opportunities. Or, they believe that coworkers will suspect they’re faking an illness to get work-related perks.
While sharing details about your condition at work is a difficult decision, support from your employer can be valuable. If migraine is considered a disability, your employer may be required to make adjustments to help you do your job, such as a flexible work schedule, adjustments to lighting or screens, or a quiet space to use during a migraine attack. Ask your doctor for a letter suggesting ways to minimize your exposure to triggers at work.
At work and home, you can address the stigma around migraine and invisible illness in many ways. Think about using people-first language to describe the condition: “living with migraine” instead of “migraine sufferers.” Or try, “I experience migraine attacks” rather than “I get migraines” to emphasize that migraine is a disease.
Also, educate yourself about migraine through reliable sources of information and support groups, so you can challenge false ideas and, in turn, share your knowledge with family and friends. If you feel comfortable enough, speak up when you hear a myth about migraine and correct it.
Self-Compassion With Migraine
Stigma can often be an internal struggle — the guilt or fear of living with an invisible illness, along with worries about what will happen if you reveal your condition.
In her personal experience as someone with migraine, and as a clinical health psychologist who treats those with the condition, Kostelnik notes that people with migraine often show perfectionist, people-pleasing traits. To help her patients, she stresses the importance of self-compassion, encouraging them to speak to themselves with the same kindness they would offer a sick friend. “Giving yourself grace and realizing it’s not your fault is a big piece of it,” she says.
Guided meditation, as well as talking to a therapist, can help you give yourself more compassion and understanding and even improve your migraine symptoms.
“I’m a huge believer that mental health is intimately tied to physical health, and I have countless patients who are able to have significant improvement in migraine once their psychological stressors are addressed,” Anderson says.
Stay encouraged, even if the first therapist isn’t a good fit. “It’s like dating; you have to find the right one. We all need a therapist at some point in our lives,” she says.
