By Dawn Buse, PhD, as told to Keri Wiginton
Headache disorders, including migraine, consistently rank among the leading causes of disability worldwide, especially for those ages 15-49. That’s a big deal. Yet people often don’t think of migraine as a significant disease. It’s often minimized and ignored.
Migraine is incredibly burdensome. But less than half of people with the disease talk to their doctors about it. And only 5% of people with chronic migraine have gotten the proper diagnosis and preventive care.
Stigma might be partly to blame.
What Do People Get Wrong About Migraine?
There are theories about why migraine is so stigmatized. One reason is that your symptoms are mostly hidden. People don't see a cast on your arm. You’re not using a crutch; you’re not bleeding.
Another reason is that, while migraine is an invisible illness, it affects people around you. You may need to withdraw to a dark room, take your medication, and sleep for a while. Your family, co-workers, or friends might have to pick up the slack.
If someone has to help you out a lot, they might unfairly think you’re lazy or are using migraine to get out of responsibilities. That’s actually a fairly common stigma.
And people often confuse migraine with other kinds of headaches. They may wonder why you can’t just take a pill from the drugstore and get over it. But it’s more than “just a headache.” It can last for days and has a long list of symptoms.
For example, you may be extremely sensitive to light. That can make it hard to go to the movies or drive when it’s bright out. You may need to skip daytime visits to the beach or park. Fluorescent overhead lights, like the ones common in offices, can also be painful.
People with chronic migraine often have other heightened senses. Some smells, like your colleague’s perfume, may be overwhelming.
On top of all that, migraine is a chronic disease with unpredictable attacks. You may function really well one day and be completely disabled the next. For someone without migraine, that can be hard to understand or believe.
Reframe Ideas Around Migraine
Chronic migraine is when you have, on average, 15 or more headache days a month. At least eight of those are linked to migraine, meaning you have migraine symptoms, or you respond to prescription migraine medication.
At minimum, that’s a headache every other day. Some people have continuous head pain. That’s on top of many other disabling symptoms that may come before, after, or in between your attacks.
It’s easy to see how migraine can reduce your engagement at work, school, or in your relationships. And justifiably so. But you may feel guilt or shame about how your condition affects others. You may start to believe and absorb other negative attitudes and stereotypes about your disease.
When you internalize stigma, it can leave you feeling anxious, depressed, helpless, or unworthy. That can be devastating to your self-esteem and well-being. Psychological distress can then affect your physical health. You could get insomnia, weight gain, immune system problems, or any of the other medical issues associated with chronic stressors.
But it’s important to know you have a disease that’s not your fault.
Try to reframe your condition in a more positive light. Tell your doctor if you have a hard time doing that. They can refer you to a counselor who works with people who have migraine.
Health professionals can also normalize your experience and let you know you’re not alone. In fact, you’re 1 in more than a billion people on the planet who live with migraine.
It's Important to Be Honest
You may not want to bring attention to yourself or burden others. But people without migraine may not have any idea how serious your condition is unless you tell them.
You might feel nervous the first time you open up. But these kinds of talks tend to leave you and the other person feeling better. And you’ll likely feel empowered when you shake off the stigma around migraine.
How to Talk to Loved Ones
One great thing you can do is bring a family member to your next migraine checkup. Let them hear straight from the doctor what your diagnosis is. Have your doc explain what symptoms are related to your headache disorder and what treatment you might need.
As much as possible, try to include your friends and family in your management plan. People who care about you want to help, so give them specific tasks. Tell your partner that it would be really helpful if they could keep the kids quiet during your attacks. Let your 3-year-old know they can bring you a cold washcloth and play quietly to help you feel better.
It’s also a good idea to give those close to you a rundown of your treatments and medication and have them ready to go before a migraine attack.
And create a backup plan for things like who’ll pick your kids up from school or walk your dog. Reach out for help from your spouse, friend, parent, or a neighbor you trust. And remember to have a plan B for dinner. Put the name and number of your favorite pizza place right on the refrigerator.
How to Bring Up Migraine at Work
Thanks to structural stigma -- when negative attitudes and stereotypes are part of policies, laws, and organizational practices -- people with headache disorders sometimes have a hard time getting the legal accommodations they’re entitled to.
But migraine is a health condition that’s protected under the Americans with Disabilities Act.
Ask your doctor to write up a short letter about your condition. They can include your diagnosis and instructions for when you have an attack. For instance, you may need to go home and sleep for a few hours, get away from bright lights, or work in a fragrance-free area.
Give your doctor’s note to your human resources department. If you work for a small company without HR, you may need to talk directly to your supervisor.
Technically, you don’t have to share health issues with your co-workers. But it can go a long way if you give them a heads-up that you have migraine. Let them know what to expect. And create plans with them for how you’ll take care of things if an attack keeps you from work.
Don’t Be Shy With Your Doctor
You need to share all of your symptoms. You may be surprised at the wide range associated with migraine, including all sorts of odd things that may not seem related.
For instance, you may have constant brain fog or get skin pain that makes it hard to wear a hat or ponytail. You may have stomach problems like diarrhea, burping, or constipation. You may smell or taste things that aren’t there. Your speech may get garbled, or half your body could go numb.
Let your doctor put the puzzle pieces together to help you figure out what’s going on.
Find Migraine Support Groups
It can be liberating to openly share your ideas, feelings, and frustrations with people who know what you’re going through.
You can find others in the same boat through online migraine communities, social media, or advocacy groups. That includes CHAMP (Coalition for Headache and Migraine Patients) and the American Migraine Foundation’s “Move Against Migraine” Facebook community.
And keep your focus on the future. Many people who live with a chronic illness stop making plans because they don’t want to disappoint people by canceling. But when you do that, life gets smaller. You may start to miss out on things that bring you happiness and enrich your relationships.
Dawn Buse, PhD, licensed psychologist; clinical professor, Department of Neurology, Albert Einstein College of Medicine of Yeshiva University, New York; board member, American Headache Society.
Current Pain and Headache Reports: “Stigma and Migraine: Developing Effective Interventions.”