How to Establish Your Own Migraine Support Network

“So many of us live in the dark, trying our best to navigate through life with an unpredictable and life-stealing illness,” writes migraine advocate Jaime Sanders. “It is important that the world sees the true impact migraine has on the millions of people living with it, not only in this country but across the globe.”

As all people living with migraine know, having an invisible disability is hard. Well-meaning friends, colleagues and family just don’t understand that a migraine attack is not equivalent to a bad headache. One way to be seen and heard is to recruit migraine allies: people who understand what you’re dealing with, who support you and who can speak on your behalf.

Migraine Allies at Work

Work colleagues may fail to understand that a person with migraine is really suffering intense, chronic pain, or may think they’re exaggerating. A study on migraine stigma found that people with migraine feel this pressure internally as well: “Migraine sufferers often anticipate that their headaches will elicit a negative reaction from friends and colleagues, or that they’ll be less productive because they have to miss work so often.”

Recruiting allies at work can help. Describe your migraine symptoms and the supports you need in a matter-of-fact — not apologetic — way to your manager and trusted co-workers. Workplace expert Alison Green offers a simple script: “Here’s the situation, I’m working to resolve it, until then it’s probably realistic to expect occasional sick days and occasional fogginess, and please let me know if this raises any concerns for you, now or in the future.”

Ask work friends for help in explaining migraine to other colleagues, so you don’t have to bear the burden of doing so over and over again. Once your coworkers understand that migraine is a serious condition, they’ll be more likely to comply with requests for accommodations, such as a fragrance-free policy.

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Migraine Allies Among Friends and Family

Friends and relatives often offer well-meaning but unhelpful advice to people with migraine. “Can’t you just take some medicine?” they might say. “Are you sure you can’t come over tonight? Maybe you’ll feel better by then.”

You know they care about you; they just don’t know how to express it. Recruiting certain people to be your advocates can help. Explain how a migraine attack affects you, or point them to online resources. Tell them what they can do to support you, such as helping you avoid triggers, or explaining to other friends what’s going on when you need to cancel plans.

Migraine Allies Online

If you feel unseen or unheard, just know that you’re not alone. You can connect with thousands of other people with migraine on social media and other platforms. Some popular options:

• The Move Against Migraine Facebook group, run by the American Migraine Foundation, connects migraine patients and their loved ones with professional advice, treatment options, information on clinical trials, and other helpful resources.
• The Daily Migraine is the largest online community for people with migraine.
• Migraine Buddy is an app used by millions to track migraine symptoms and connect with other people with migraine.
• The CEFALY Users’ Group is a global community of people who use the CEFALY device to prevent and treat migraine. (A smaller group, CEFALY Users USA, is for people in the U.S.) Both groups are organic; we don’t own or moderate them, although we do pop in to answer questions!