Modeling Migraine Conversations

How to discuss migraine at work, school and home

If you live with migraine, you know that discussing the disease can be difficult. That’s why the American Migraine Foundation and Dawn Buse, PhD, psychologist and clinical professor of neurology, put together some helpful tips to navigate those tough conversations to help you prepare to be your own best advocate at work, school or home.

Tips to Guide the Conversation

Start with education

Create a migraine “elevator pitch.” In a few sentences, explain what migraine is and how it impacts you personally. Sharing what is involved in a migraine attack and how it affects you can help others who have never experienced an attack understand how debilitating it can be.

Example: I live with migraine. It’s not just a headache—it’s a neurological disease with attacks that have many symptoms like pain, nausea and extreme sensitivity to light. This makes it hard or impossible to function. An attack can last for days, and can happen out of nowhere—interfering with my work, plans and relationships. Sometimes I worry about making plans in case I have to cancel and disappoint others.

Practice makes perfect

Practicing your elevator pitch will help you explain things clearly and calmly when you need to. Dr. Buse advises that you come up with 3-5 main points, write them down and practice saying them out loud. She says you can practice with a trusted friend or family member, or even on your own with an empty chair or in front of your pet. This practice will help you feel confident when you have to have this conversation in a more stressful situation. While an in-person conversation is usually the most effective way to communicate, having these conversations in-person might be too difficult or create too much anxiety; Dr. Buse suggests starting by sharing your thoughts in writing and inviting a follow-up conversation.

Have the right conversations with the right people

Tailor your message depending on whom you’re speaking with. The information that you choose to share with a close friend will probably differ from what you say to family members, employers and coworkers, teachers or school administrators, or a new romantic relationship. But while all of these talks will vary in how they’re approached, the important thing to remember is that you have the right to share as much or as little as you choose, and to be heard and respected. Dr. Buse reminds us that when it comes to school and work, you may have additional legal protections and rights for reasonable accommodations.

Specific Situations

Family

Being open and honest about the effect of migraine on family life and relationships is important. Migraine can negatively impact activities and the emotions of family members. The content of migraine conversations may be different depending on if you are talking with a spouse/partner, child, parent or other family member. Dr. Buse advises explaining your experience during a migraine attack and offering suggestions for how they can help you when one occurs.

People who care about you want to help, and may feel frustrated and helpless that they cannot. Dr. Buse advises giving even the youngest family members suggestions on how they can help you during an attack, such as bringing you a cold wet washcloth or playing quietly in another room while you rest or sleep.

You may also want to ask family members how your migraine is affecting their life and what feelings they have about it. While initially it may be hard to hear, ultimately acknowledging their feelings and the impact they experience may help break down communication barriers and eliminate negative feelings like resentment. Having regular open conversations about the challenges and burden of migraine and acknowledging the negative emotions that it can cause for everyone can help everyone feel heard and respected. Then, you can work together to create plans for how to best navigate life with migraine for your family.

Example: Migraine is not something I chose to live with, but I know it can put stress on important aspects of our lives together. I appreciate your patience and support and want to help reduce any frustration and burden that you might feel. I hope that we can communicate our feelings openly and work together to develop coping strategies and advance planning to reduce the stress and interference that my migraine has on our family.

School

People with migraine may be legally entitled to extra help and accommodations in academic settings. Dr. Buse reminds us to share medical information with the appropriate people as early as possible. She says that people often wait until migraine has a negative impact on an important academic requirement like missing a final due to a migraine attack. She says that things run smoothest when the proper people are informed at the beginning of the school year with written information about diagnosis and a treatment plan. A letter from your health care professional with your diagnosis of migraine and a sentence or two about your treatment can be shared with teachers, and administrators like a principal or school nurse can put these in your file in advance.

For parents with school-age children, this means setting up an appointment with an administrator to discuss your child’s diagnosis and symptoms. You should also discuss accommodations and a plan that could help during an attack, such as being dismissed from class to take a medication, or being allowed to lie down or to call someone to pick them up. Learn the school policy about medications on campus and find out what facilities are available if someone is sick (if there a quiet place to lie down, for example). In addition, accommodations such as being allowed to keep a water bottle on hand in class, wear sunglasses or therapeutic glasses inside, or have a snack every few hours can also be discussed, and may be very helpful and comforting. Ask your healthcare professional to write these requests in the medical letter.

College students should stop by their university’s office of student disabilities and/or student health center to create a file, meet the staff, and learn about available accommodations and support at the beginning of the school year or as early as possible.

Work

You may also have legal rights and protections in the workplace. Discuss migraine with your human resources department and your manager as early as possible. Bring a letter from your health care professional with your diagnosis, as well as a brief explanation of your treatment plan and necessary and reasonable workplace accommodations, such as being allowed to keep a water bottle close by, taking regular breaks, wearing sunglasses or therapeutic glasses, turning off overhead lights, enforcing a fragrance-free workplace, and addressing any other factors that may help reduce the frequency and/or severity of your attacks.

Example: I live with migraine, but that doesn’t need to keep me from performing my job duties. With some small changes in my workspace, I may be able to better manage my migraine and keep it from impacting my productivity. When I have an attack, I will need to take my treatment and rest quietly for a period of time. I will work with you in advance to have accommodations in place in advance to cover responsibilities that I miss due to migraine.

Just like making plans in advance with family, it is wise to discuss how and when work will be covered or made up if you miss work or are unable to perform duties due to a migraine attack. This demonstrates to your boss that you are responsible and care about your work performance, says Dr. Buse.

It is important to have these conversations not only with administrators and your boss, but also to explain migraine and its potential effects to co-workers, as well. Dr. Buse says that it shows empathy and respect to acknowledge that your disease may affect coworkers. While migraine is not your fault and you have every right to care for yourself when an attack strikes, acknowledging that it can impact others will often bring their guard down, facilitate understanding and encourage open conversation and collaboration.

When having these conversations, it is not uncommon to feel anxious, guilty, or embarrassed. Don’t. Migraine is a disease that you did not choose, and you are doing your best to maintain your relationships, academics and career despite living with migraine. The American Migraine Foundation is here to help and support you on your migraine journey.

The American Migraine Foundation would like to thank Dr. Dawn Buse for helping us model these migraine conversations during a Facebook Live event.