6 Ways You Can Advocate for Migraine Awareness in “Real Life”

Migraine awareness starts with you. Here’s how to get started as an advocate.

There are so many fantastic awareness campaigns focused on education and bringing the migraine community together.

As much as I encourage those of us living with chronic migraine to join awareness campaigns, I’m also passionate about helping others find ways to speak up about migraine outside of official migraine community events or movements.

Speaking up about migraine in our day-to-day lives has the potential to reduce stigma and contribute to significant change.

Here are six ways to get started advocating in “real life.”

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Don‘t downplay your symptoms

It can be really tempting to downplay symptoms of migraine for many reasons. This is something I was guilty of myself for many years.

I didn’t want to cause alarm for people around me or seem like I was just being dramatic. I feared that if I told how my migraine symptoms really were, people wouldn’t believe me.

What I realized eventually was that by not speaking up and being honest about the symptoms I was experiencing, I was further adding to the stigma around migraine that it’s “just a headache.”

By not being vocal about the extent of my symptoms, I was minimizing the true nature of what I was experiencing.

One of the easiest ways to advocate for migraine in your everyday life is to share your story and explain the symptoms of migraine you experience.

This is particularly important to do when it comes to symptoms other than head pain that people might not commonly associate with migraine.

Stop calling migraine “migraines”

Being mindful of the language we use around migraine is a simple yet powerful way to help advocate for migraine awareness.

The term “migraines” adds to the stigma around migraine because it likens migraine to headaches. This makes migraine sound like an acute condition that you experience from time to time.

Migraine is a neurological condition that you live with all the time, even when you’re not having a migraine attack.

Think about how when we talk about someone who has epilepsy, we don’t say they “have epilepsies”, but that they have an “epileptic attack”.

Instead of saying you get “migraines”, try saying “I live with migraine” or “I have a migraine attack.”

Ask for workplace accommodations

Speaking up at work and asking for accommodations can help reduce the effect of potential triggers. This can help you better your own migraine symptoms in the workplace.

It can also pave the way for other employees who feel unsure about speaking up or asking for help.

So many people are afraid to ask for help at work for fear of being judged or not taken seriously. Asking for what you need and opening up the conversation about migraine at work sets the precedent for others.

Speaking up also enforces the fact that migraine is a chronic condition that people need to take seriously and support in the workplace.

Explain how migraine affects your life

One of the biggest mistakes I see people making when talking about migraine is not fully expressing how migraine affects their life.

When speaking with friends and family, it’s really easy to focus on diagnostic terms or the frequency of attacks, such as “I have chronic migraine” or “I’ve had a really bad month of migraine attacks.”

Of course, it’s important to communicate this information to our loved ones, but it can be even more important to explain how migraine affects your day-to-day life.

Talk about how living with migraine affects your ability to function day-to-day. Talk about the effect it has on your work and your passions.

Share about the influence it has on your relationships, your marriage, and your kids. Open up about the implications migraine has on your mental health.

How can we expect people to understand the complexity and debilitating nature of migraine if we don’t tell them how it affects our lives?

Don‘t settle for a dismissive doctor

One fact many people living with migraine come to realize is that headache specialists can be hard to find.

There are simply not enough to go around, and so many of us have to navigate medical care for migraine at the primary care level only.

There are some great doctors, specialists, and primary care doctors alike, who will work with you to help you figure out how to manage migraine symptoms and find relief.

But not every doctor will have a comprehensive understanding of the nuances of migraine and the different options for treatment.

One courageous way to advocate for migraine is by not settling for a doctor who is dismissive, or one who doesn’t take migraine seriously.

You deserve to have a doctor who will work with you to help you find relief and better management of your migraine symptoms.

Be bold and share your story

I encourage everyone to speak up and share their own story of living with migraine with the world. I’ve found so much strength in sharing my story and connecting with a community of people who understand what I’m experiencing.

Examples of how to start sharing your story include:

• posting your experience online via social media, a blog post, or in a Bezzy forum
• giving a talk in your local community, place of worship, or workplace
• hosting a fundraising event
• starting a petition and being a voice for change
• creating a podcast

Remember that there are endless ways to share your story and no one “right” way to be an advocate. Be bold, raise awareness, and reduce the stigma.