Advocating for Yourself: How to Be Taken Seriously When You Live with Migraine

Migraine is so much more than “just a bad headache.” Here‘s how I speak up when my experiences are being minimized.

Even though it’s estimated that 1 in 8 people worldwide lives with migraine, migraine remains a highly stigmatized and misunderstood condition.

Migraine is often dismissed and minimized as “just a headache,” but this couldn’t be further from the truth. Migraine is a complex neurological condition in which, head pain (if even present), is only one of many debilitating symptoms that can impact the whole body.

I’ve been learning to navigate life with chronic migraine for over 7 years now and wanted to share my top tips on how to be taken seriously as a migraine patient.

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Become an educated patient

The more you understand about your own condition, the better equipped you are to explain it to others. This may sound obvious but getting to know the ins and outs of your own diagnosis is crucial.

Migraine is a spectrum disorder with many subtypes. Learn about the specific type of migraine you have, how it differs from other types, what treatments are available, and what the research says.

Staying up to date on current research about migraine and learning about different treatments being tested are great ways to become a professional patient.

Educate your loved ones to let them see the reality of migraine

Only those closest to us tend to see the real impact of migraine on our day-to-day lives.

Many family members and friends who aren’t in such close proximity to you may find it difficult to comprehend the full impact migraine has on your life. Take the time to explain to your loved ones, how migraine debilitates you.

They may know you live with migraine, but do they know what that means for you?

Do they know you get facial numbness and slurred speech during an attack? Do they know that you are often irritable or have trouble finding words during the premonitory stages of an attack? Do they even know there are different stages to a migraine attack?

It’s important to stress how quickly migraine can change. You may be OK one night, having dinner with a friend, but then be in bed with an attack for the next few days.

Explaining how migraine impacts us helps loved ones gain insight into what we are going through and understand the severity and complexity of migraine.

It can also be helpful to share what treatments and therapies you’re trying or have previously tried. This can help reduce the “have you tried X” comments.

Educate your co-workers and employer to be a voice for change

Ensuring migraine is taken seriously at work is no easy feat. It’s one of the most common reasons for absenteeism and unfortunately, the word “migraine” is still used very casually by people to describe a regular headache.

Migraine is not an excuse for not going to work — it’s an explanation. Migraine is debilitating. Explaining how and why migraine attacks debilitate you is so important for helping your co-workers and employer to understand.

Work with your employer and co-workers to create a plan of action if you get an attack while at work. Making an attack plan, and sharing it with your team, is a great way to ensure your employer takes migraine seriously. A plan can also give you back some control and reduce your stress about migraine at work.

It’s also worth speaking to your employer about workplace accommodations that might help you; for example, a change in office lighting or a scent-free policy. Keeping an open conversation around migraine at work can even help advocate for others who are perhaps too scared to talk about migraine at work for fear of judgment or not being taken seriously.

Educate your doctor to help them help you

For most people living with migraine, seeing a headache specialist is not a realistic option. Most migraine patients end up being treated by their primary care doctor.

Some primary care doctors don’t have the same level of knowledge about migraine and headache disorders that a specialist would have, but most are well-equipped to treat migraine.

Advocating for yourself in doctors’ appointments can help your doctor get a better sense of your experiences by opening the line of communication.

If you want to make the most out of your doctors’ appointments here are some practical things you can do that might help.

• Take your migraine and headache diary with you: There’s no specific test for migraine; it doesn’t show up on a blood test. Taking a migraine diary is a fantastic way of explaining the extent of your symptoms to your doctor.
• Take a list of questions with you: Having a physical list can be really useful to refer back to during an appointment, especially when you don’t have much time. It’s also a clear indicator to the doctor that the issue is important to you and you have spent time preparing for the appointment.
• Put together a list of treatment options that you have researched and are interested in trying: If you have researched your options ahead of the appointment and come prepared with medication overviews, or even supporting research, your doctor is likely to be much more open to discussing other options with you.
• Finally, you’re allowed to see a different doctor: If you’re not getting anywhere with a certain doctor, it’s OK to see someone else.

The bottom line

Living with migraine is difficult, especially when it feels like other people don’t understand what it’s like. When loved ones, doctors, or co-workers don’t take your experiences seriously, managing migraine is even more challenging.

It’s important to remember that you know your body best and you are your own best advocate. Often, when people minimize migraine it’s because they just don’t understand the condition.

The more you speak up and share your experiences with the people around you, the more they will learn the full impact of the condition.