Be a migraine advocate
Migraine,  Migraine Advocacy

How To Be A Migraine Advocate

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June is Migraine and Headache Awareness Month. Every year, in June, migraine advocates, health care providers, and various organizations combine their efforts to raise migraine awareness. Migraine Strong stands with all of them by raising migraine awareness to eliminate the stigma.

As you may know, Migraine Strong is led by 4 strong women who also have migraine. Each one of us used our experiences of pain and transformed them into passion to advocate and help people take control of migraine.

Migraine is a debilitating neurological disease that affects 39 million men, women and children in the United States and 1 billion worldwide. Migraine is prevalent, destructive, misunderstood, and often dismissed as “just a headache.”  After all, it is an invisible illness. The pain, dizziness, brain fog, aura, tinnitus, just some of its symptoms cannot be seen or heard by our friends, co-workers, employers, or strangers. As a result, people with migraine are not always believed or are thought to be exaggerating. This contributes to the stigma surrounding the disease.

Stigma

The migraine stigma affects research funding, causes mistreatment of employees in the work setting, and increases social isolation for people with migraine. It even contributes to the shortage of medical professionals focused on migraine.

In fact, it is because of stigma that people with migraine are less likely to talk about their experiences. And it is that silence that feeds the stigma and it becomes a vicious cycle. How do we break away from this cycle? We need to speak out and raise and awareness.

Migraine awareness

Dr. Robert Shapiro, a board-certified neurologist and professor of neurological sciences at the University of Vermont, said that “in order to move beyond the stigma” it is actually “important and necessary” for people with migraine to speak up about their symptoms and the disease.

“Advocacy takes many forms,” said American Migraine Foundation Director Nim Lalvani. “It could range from telling a family member that you live with migraine to fighting for migraine-friendly policies in the broader community.”

If you are interested in making a difference in the migraine community, it is up to you to figure out what makes you the most comfortable and where you can make the most impact. Here are the five ways you can be a migraine advocate:

1. Speak with your friends and family about migraine

By sharing your migraine story with your family, friends, or co-workers, you can educate them about this neurological disease. You have an opportunity to teach them that migraine is more than a headache and that it has a devastating impact on people’s lives, including your own. Once you start talking about migraine, you will be surprised how many people you know also have been affected by this disease. Yes, at first, sharing our story can be scary and intimidating for fear of being judged or shamed. But there are so many positives to sharing your story as well. Sharing our story can help others realize that they are not alone and offer hope that they desperately need. Sharing our story can also be empowering and help ourselves during the healing process. Finally, sharing our story raises awareness by teaching others to appreciate the impact migraine has on our lives.

Your voice and story is unique and powerful. It can make an absolute difference and so can you. Use it to join other voices to make a change. Inspire others with your story of strength and hope.

If you need help starting a conversation with your family and friends, send them this Open Letter to Family and Friends of people with migraine.

2. Share information about migraine on social media to spread awareness

Social media can be a valuable tool in raising migraine awareness. In addition to the Migraine Strong Facebook group, Migraine Strong has a strong presence on social media with an Instagram account, a public Facebook page, and a Twitter account. These accounts are public and that is where we post blogs, graphics, and articles about migraine. When you see an article, blog post, or other helpful information about migraine disease, share the link to your Facebook page, Instagram account/stories or re-tweet on Twitter. By doing so, you are spreading awareness.

You can also find the Migraine Strong team on Instagram raising migraine awareness on our individual accounts. Feel free to say hi to myself, Eileen, Danielle, and Jennifer.

3. Change your language

It is time that we collectively started being intentional about our language when it comes to migraine. Migraine is not a headache and we need to stop referring to it as such.

One of our Migraine Strong FB Group administrators, Jennifer Bragdon, has been vocal about this topic in the group for the past year. So we were excited to hear at the 2019 Migraine World Summit that most experts do not use the word “migraines.” The “s” in the word “migraine” needs to be eliminated because migraine is a disease, not a symptom. It is a neurological disease which doesn’t just exist while we are in the middle of an attack. We don’t get “A migraine” or “migraineS.” We HAVE migraine. Even when we are not experiencing symptoms, Jennifer goes on to say, “we have to work on suppressing an attack through trigger avoidance, lifestyle changes and for some of us, daily preventive medication(s).”  While talking about specific symptoms (head pain, dizziness, nausea, paralysis, fatigue, blurry vision, etc), refer to them as “migraine attacks”, or “migraine pain.”

Why does changing the language even matter? Referring to migraine disease as “migraines” sounds to much like “headaches” and further perpetuates the stigma that migraine is just like a headache when it is so much more disabling than that. This small change in our vocabulary can make a huge impact in reducing stigma and raising migraine awareness.

4. Be your own advocate

One of the ways to become an advocate is to become your own! It is absolutely necessary to be your own advocate before advocating for anyone else.

Educating yourself about migraine, possible diagnoses, symptoms, and treatment options is one of the best things you can do for your health. Showing up for an appointment with your neurologist or a headache specialist and passively listening to what they have to say may not be enough to set you on the path for improvement. You need to come as an informed and educated patient who is prepared for the appointment and ready to be involved in the conversation about your care. Becoming your own advocate is your best chance at improving your health.

Every year the Migraine Strong team tunes into the Migraine World Summit where we learn about the latest treatment and research from the leading experts in the field. Consider buying the pass to this past year’s Summit if you haven’t had a chance to listen to it for free as it aired. There was so much invaluable information! And make sure to watch it next year.

If you have an appointment coming up, make sure to be ready with 20 Questions to Ask Your Specialist.

5. Join a migraine Facebook group and support others while being kind

Those of you who are members of the Migraine Strong Facebook Group already know that we are a different kind of group. Our administrators try to respond to every post and help with every question. Our members and administrators speak to each other with utmost kindness and respect. Migraine Strong is our safe space and we guard it fiercely. Our members are advocates on a daily basis. They push each other to advocate for themselves in their daily lives and they do so with compassion. Whether its giving advice on how ask doctors about trying out new medications, how to speak to family members about migraine, or how to stand up for themselves in the workforce. Our migraine family is raising our own advocates.

There are many migraine groups on Facebook. No matter which group you join, you can become a migraine advocate as well. You can share your experiences in the group, help other members with questions, and support them on their individual healing journeys. Along the way, be gentle and kind.  

Furthermore, ask the administrators of the group if you can assist them in raising migraine awareness, by sharing blogs, graphics, facts and quotes.  

Other Ways To Get Involved

In addition to the 5 ways discussed above, there are more opportunities to get involved:

Headache On The Hill – the goal of Headache on the Hill is to unite healthcare professionals, migraine and cluster headache advocates and patients to speak to members of Congress about the experience of living with migraine. If you do not wish to speak in front of Congress, head on to the “Take Action” tab on their website for tasks you can do at home.

Miles For Migraine – Miles for Migraine produces fun walk/run events, typically a 2-mile walk and 5K and 10K races to raise money for migraine research. It also hosts adult education days, and a youth program for kids and teens impacted by migraine and other headache disorders. What a fun way to raise awareness and stay active. Check out their calendar for the races near you.

Runnin’ For Research – organizes and implements 5K runs and walks throughout the United States. Their mission is to improve the quality of life of those who suffer with headache and migraine disorders through fundraising for quality research and the promotion of patient empowerment, community awareness, and local and national advocacy. Check out their calendar for the races near you.

Migraine Solidarity Day, June 21, wear a pair of sunglasses to support the 1 billion people worldwide who live with migraine disease. Post your photos to social media with the hashtags #ShadesForMigraine and #MHAM.

RetreatMigraine – this is a conference led by and focused on people living with migraine disease. The retreat provides support, community, disease and treatment education, advocacy training, and complementary therapy experiences. RetreatMigraine has concluded for 2019. You can check back here for announcements about future events.

The Mighty – become a contributor for The Mighty, a digital health community created to empower and connect people facing health challenges and disabilities. Write your story or an article about migraine or another chronic illness you have and submit it to them for approval. If they like it, they will publish it!

Your voice matters

We often feel that our own voice or actions do not matter. We tend to see ourselves as not significant enough to make a change. Often we think that someone else will make a difference. But it is that kind of thinking that stalls our progress. We can all make a difference together by taking those actions that best fit our personalities and that we are physically capable of doing.

I will leave you with inspiring words from Amaal Starling, M.D., a top headache specialist, and an amazing advocate in the migraine community, who said “There’s no room for stigma, shame and blame in the genetic neurologist disease of migraine. Reframe migraine one conversation at a time until we shatter the stigma. If we can eliminate stigma, there will be increased funding, more specialists, and better treatments.” You can follow Dr. Starling on Twitter where she writes her own tweets.

How would you like to contribute to the migraine community? Leave your comments!

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How To Be A Migraine Advocate

I became chronic with migraine during my two pregnancies in 2014 and 2016. By the end of my second pregnancy I was experiencing daily migraine symptoms and attacks. I was home bound with the exception of going to doctor appointments. My migraine disease was complicated by the medication overuse headaches. I took control back by stopping all my abortive medications and following the Heal Your Headache and then Charleston Neuroscience diets. That together with the Migraine Strong Treatment Pie, which includes preventive medications, meditating, and supplements, helped me go from chronic to episodic. I was able to return to living an active and fulfilling life with my children and husband and working as a lawyer while my children are in school.

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