How to Explain Your Migraines to Family Members Who Don’t Exactly Get It

The day-ruining nature of migraine attacks is a fact of life for many people who have the condition. Even so, it can sometimes feel impossible to communicate the very real burden ofmigraine to family members (including among your chosen family) who don’t know what it’s like. Let’s be honest: For many people, navigating family dynamics can be tricky in general. But having your loved ones’ support can be critical when it comes to making progress in your migraine care and in sustaining your overall well-being and happiness.

Some family members might absolutely get it from day one, while others might have preconceived ideas about migraine and a person’s ability to just soldier through. “Migraine is an invisible illness that [many people] tend to misunderstand,”Britany Klenofsky, MDan assistant professor of neurology at the Icahn School of Medicine at Mount Sinai and an expert in headache medicine, tells SELF. “Someone can look healthy on the outside but be suffering greatly from this sometimes-disabling illness.”

People who don’t experience migraine can’t fully understand how excruciating it is to be in a room with bright lights or loud sounds during an attack, Dr. Klenofsky adds, or even how bending over to pick something up off the floor can make your head pound. But opening up the conversation can lead to better relationships for everybody. “If family can learn to understand the symptoms and limitations in activities that migraine [can cause]there may be less resentment for missed or limited participation in family events and gatherings,” she explains. Plus, you can help your family helpyou in the moments when you need that most.

So how do you start these conversations? We spoke with experts to learn what they recommend.

1. Wait until you’re not in the middle of an attack.

If you’re in the middle of a migraine episode, wait for it to pass before having a conversation with your family about your condition more broadly. Focus on your immediate needs instead,Leon S. Moscatel, MDa clinical assistant professor in the division of headache and facial pain at Stanford School of Medicine, tells SELF. Migraine attacks are tough enough without the added stress of feeling like you have to explain yourself.

That includes the postdrome phase—the final stage of a migraine that’s sometimes called a “migraine hangover”—when people can have difficulty focusing and may experience symptoms that can affect their ability to communicate clearly,Anna Pace, MDan assistant professor of neurology at the Icahn School of Medicine and director of the Headache Medicine Fellowship Program, tells SELF. It’s best to save important conversations for when migraine symptoms aren’t muddling your thoughts or causing you pain.

2. Start by asking questions.

Most family members will already know you experience migraine, so consider first addressing their questions, rather than setting out by making requests. This helps ground the conversation in what your family already understands, and gives you an opportunity to share migraine experiences through your own lens or correct any misconceptions.

For example, you might ask what they think migraine is and what they think happens during a migraine attack, says Dr. Pace. “A patient could then explain to the family member how they experience their migraine attacks, what symptoms are most bothersome to them, and how their attacks may affect their daily routine or tasks,” she says.

3. Focus on the symptoms that affect you the most.

There are lots of ways that loved ones can support you during a migraine, but the best approach will be unique to your individual situation. Before you go into a conversation, take some time to think about what would be helpful based on the symptoms that bother you the most, Dr. Pace says.

Every person’s constellation of migraine symptoms is specific to them, so once your loved ones’ questions are addressed, continue the conversation by talking through what symptoms you know are the most debilitating and asking your family about how they might be able to help with those pain points.

For example, if yourmigraine attacks cause nauseahaving someone grocery shop, prepare food, or even just make sure you’re staying hydrated can be a godsend. If you know you usually experience light and sound sensitivity, family members can be at the ready to adjust the TV or lamps. You might ask them to step in for various errands, help with childcare, or pick your kids up from daycare or other activities, Dr. Pace says: “Some people may have visual changes during a migraine attack, so they may not be able to drive or commute.”

4. Offer to bring them to one of your doctor appointments.

A health care provider can back you up to help your family understand exactly what you’re going through—whether that means validating how intense symptoms can be during a migraine episode, or reinforcing how importantpreventive measures are in staving off attacks.

Doctors can also guide you through integrating your family action plan, medical treatments, and preventative techniques, Dr. Moskatel says. For example, in addition to learning about how to prepare your rescue medicationfamily members can support lifestyle habits that can help keep your migraine attacks at bay, like keeping a consistent sleep schedule, not skipping meals, and getting regular exercise, he explains.

5. Get clever about talking to kids.

It can be harder for children to understand the nuances of migraine—and they’re not always great about giving parents a break. That doesn’t mean you shouldn’t involve them though! Dr. Klenofsky suggests using playtime and storytelling through dolls to help explain migraine to young children. “It’s important to [reassure] children that you are not unhealthy, and they do not have to be scared,” she explains. You can emphasize that you don’t want to miss out on playtime or school pickup, but thatmigraine can sometimes limit your activity—and that someone else who loves them will always be there if you can’t be.

Dr. Moskatel has migraine himself, and he often tells his son if he needs to rest. He also tries to come up with solutions that work for both of them. “When possible, I give him the option to keep me company with quiet activities that don’t need a lot of light or sound so we can still spend time together,” he says.

Conversations about migraine don’t have to only focus on the downsides. Dr. Klenofsky recommends highlighting successful people who have migraine to help normalize the condition. “I do think it’s positive to show loved ones that even successful athletes like Serena Williams, who works exceptionally hard and has a very dynamic life, suffer from migraine,” she explains. “It shows that this is not a disease for a weak person and can affect anyone.”

6. Enlist some outside help if you or your family members are having difficulty coping.

Even when your loved ones know about your condition, they still might have a tough time understanding what you’re experiencing and accepting how it impacts you and them. And you might have big feelings about your condition and how it affects you and your family.

“Many [people with migraine]feel guilt over limitations in activities,” Dr. Klenofsky says. “You may feel like you must save energy for work and then limit activities at home, which is hard for young children to understand. Family members may feel burdened by extra housework or sadness over their loved one missing things.” A whole grab bag of emotions here is completely normal—for you and for the people who love you.

Dr. Moskatel says he encourages anyone with migraine to seek out all the care that they feel is necessary, including mental health resources. A therapist or counselor can offer techniques that help you and your family continue to have open, honest conversations about these realities. “For many patients with migraine, this is a lifelong condition,” he adds, “and so it’s crucial for family members to understand the process, as well as provide support.”

Related:

• Living With Migraine Made Me Feel Betrayed by My Body—Here’s How I Made Peace With It
• 5 Signs Your Doctor Isn’t Taking Your Migraine Pain Seriously
• 6 People Living With Migraine Share How They Prioritize Self-Care