As appears in: She Knows by Caitlin Flynn
Living with chronic migraines is no small feat. The illness takes a physical, mental, and emotional toll, and unfortunately it can impact our relationships. There are many damaging myths and misconceptions about migraines — and one of the most common is that a migraine is simply a bad headache and we’re exaggerating when we explain that a migraine attack is excruciating and debilitating. Any chronic illness can be isolating and lonely, and that’s why it’s so important that migraine sufferers have a strong support system.
“Having people you can rely on to support you during an attack (to pick up medication from the pharmacy, cancel events, or take you to the doctor’s office or ER) can be helpful to managing your attack,” Dr. Gretchen Tietjen, director of The Center For Neurological Disorders — Headache Treatment & Research at The University of Toledo, tells SheKnows. “But your support system can also give you peace of mind that your children and pets will be cared for until you recover. Support and empathy from loved ones can help stave off anxiety and depression, which in turn amplify pain.”
This has certainly been the case for Kaitlyn W., 32. For most of her life, Kaitlyn says she kept her migraine attacks to herself because it was “impossible” to describe the level of pain she was in. When she first tried, Kaitlyn recalls that one too many friends and boyfriends were dismissive about the seriousness of her illness. “But not having the support from people in my life made me feel very alone when an episode came on,” Kaitlyn tells SheKnows. “Eventually taking the time to explain to the people around me what I go through when I have a migraine was an invaluable effort that I wish I made sooner.”
When she has a migraine, Kaitlyn sends out a “Migraine Day” text to her friends so they know not to call or text her for a little while because screen time makes migraine symptoms worse. Instead, they send an email or leave a voice note to check in, and her boyfriend grabs an ice pack from the fridge and turns the music down. “These little gestures help me feel supported and validated when I’m suffering, which honestly eases the struggle,” Kaitlyn says. “The only thing that makes a migraine worse is when the people around you think it’s just a headache and you’re being dramatic.”
If you’re unsure of how to go about forming a support system, Dr. Komal Naik, DO, neurologist with Summit Medical Group Neurosciences, recommends talking with your doctor about the best way to approach conversations with the people close to you. “Open up. Talk to your loved ones and educate them on migraines and the level of disability it can cause,” Naik advises. Tietjen emphasizes that it’s important to be honest with family and friends about your needs and to offer concrete suggestions on how they can support you. “Bring them with you to a doctor’s visit or a lecture so that they can better understand that this is a real medical condition and that there are many different treatment options,” she suggests.
Naik also recommends connecting with other people who experience migraines. “There are many support groups online in this day of social media,” she says. “These groups understand how chronic migraines affect one’s life and can be a great resource and source of support.”
Andrea L., 28, says online support groups have helped her feel less alone. “My family and friends are really helpful and I couldn’t be more grateful for them. But sometimes I just really need to talk to someone who knows exactly what I’m going through.” Andrea doesn’t have any friends or family members in “real life” who experience migraines, but private Facebook groups for migraine sufferers are full of people who are fighting the same physical and emotional battles as Andrea. “It’s just a safe, judgement-free zone to vent about how difficult living with migraines can be,” she explains. “And I don’t feel like a burden or a total downer because I’m talking to people who are in my shoes and are dealing with a lot of the same emotions.”
Support groups are more than just a place to vent — they’re also a space where fellow migraine sufferers can share advice and tips about how to cope with the illness. When people discover a product that helps ease the symptoms of a migraine attack, Andrea says they’re eager to share it with the group because it will hopefully help someone else. And if you’re having trouble finding the right doctor or treatment strategy, it’s a good place to ask for suggestions.
If you’re not big on social media, there are other ways to find support groups. Dr. Charles Gellido, board-certified neurologist at IGEA Brain, Spine & Orthopedics, recommends visiting the websites of organizations such as The American Migraine Foundation and The Association of Migraine Disorders. “My advice is to go online and discover vast information about migraine and people who suffer from it,” Gellido tells SheKnows. “You’ll be surprised as to number of groups who can offer help.”
Forming a support system is a process that may not happen overnight — but, as Kaitlyn noted, it’s well worth the effort and you shouldn’t give up if a friend has a less-than-empathetic reaction. Doctors who treat patients with chronic migraine say they observe a marked difference between people who have strong support systems compared to those who don’t. “The emotional support alone is invaluable, and of course if there’s help with handling meals or with childcare, for instance, that provides significant relief for someone with chronic migraines,” Naik tells SheKnows.
In addition to the invaluable emotional support, friends and family members can make a major difference by simply helping their loved one get to appointments and keep up their treatment regimen. Dr. Stephen Silberstein, MD and Professor Director of the Headache Center, Sidney Kimmel Medical College at Thomas Jefferson University, tells SheKnowsthat he has migraine patients who are too sick to come into the office and can’t get to public transportation. “Some have friends or family who can drive them or look after them,” Silberstein says. “What if you’re vomiting? Who’s going to make sure you’re OK? You really need to have somebody to check up on you. To know that they’re there and they care really makes a difference.”