How to build a network that really has your back
Migraine is a disabling disease that no one should have to go through alone. It’s essential to build a support network of understanding people who can not only check in on you during an attack but also empathize with your experience. We spoke to members of the Move Against Migraine group and Dr. Brooke Pellegrino, a clinical health psychologist at the Hartford HealthCare Headache Center to compile the following advice for finding a support system.
Speak to your friends and family about your migraine
Your friends and family members can be wonderful resources to help you cope with migraine. Move Against Migraine member Kelley gets through migraine attacks by “Focusing on her family and things that really matter to her.” However, Dr. Pellegrino says it’s common for patients to not tell their friends and family about their migraine because they don’t feel that they will be understood.
“I definitely encourage most of my patients to tell family members and friends what they’re going through, and try to help them understand as best as they can,” said Dr. Pellegrino. Start by downloading the American Migraine Foundation’s guide “What to do After the Diagnosis” to find the words to describe your disease in a way that your support system understands.
Remain engaged in your existing community
It’s tempting to spend headache days cooped up in a dark room away from noise and other triggers that make the pain worse. However, that can lead to symptoms of depression and anxiety, and isolate you from your community. Member Tandie said, “I refuse to let migraine control every aspect of my life,” and tries to miss as little as possible because migraine has already taken so much from her.
That’s a great attitude. Try to stay involved through activity pacing, which Dr. Pellegrino describes as “trying to be as involved in your life as you can on your bad days, and then not completely overdoing things on your good days.” She cautions patients that taking an all or nothing view is detrimental and that they should remain consistently engaged with their community as long as their health allows.
Find an understanding headache specialist
You should have a good relationship with your headache specialist or neurologist since living with migraine means spending a lot of time with them. Your doctor should make you feel comfortable, listen to your concerns and prescribe you treatment that you both agree on. Move Against Migraine moderator Carly advised members to not be afraid of changing doctors.
“When I felt mine was not listening to me I found a new one,” she said, “I am happy now.”
The AMF maintains an online database of neurologists and other healthcare professionals who specialize in head pain so you can find a doctor near you. Remember, you deserve to receive care from a caring and understanding provider.
Join an online migraine support group
The internet has made living with chronic pain less isolating, especially on days where leaving the house is not an option. Support group member Rachel says that while she doesn’t have support in person, “some of the migraine support groups have saved [her] in many ways.” While there are many groups and support communities, Dr. Pellegrino advises patients to find a well-moderated group that promotes healthy dialogue, doctor-sourced information and an educational component.
The Move Against Migraine community is 14,000 patients strong and a source of daily support, inspiration and information. With weekly Facebook lives where patients get to ask doctors and healthcare experts questions about migraine and more, the group strives to empower patients with resources and support. Join our support community if you’re looking for the reassurance that someone has your back and that your migraine is not “just a headache.”