My Migraine Journey to Patient Advocacy

Chronic migraine sufferer Jaime Sanders – more popularly known as the Migraine Diva – has turned her pain into purpose.

My journey to patient advocacy started when I was diagnosed with chronic migraine in my late 20s. According to the International Classification of Headache Disorders, chronic migraine means “headache occurring on 15 or more days per month for more than three months, which on at least 8 days per month, has the features of migraine headache.” Prior to this diagnosis, I had lived with “a lesser condition” known as episodic migraine, or migraine that occurs 14 days or less per month, since the age of 8 years old. So much for growing out of it.

Receiving this news and learning how to live with pain daily was hard to digest. I felt extremely isolated and alone. I had never heard of chronic migraine before or that migraine could become so severe and difficult to treat. There was no one I could relate to or share my experiences with. My family was super amazing and supportive, but none of them could understand how hard it was for me.

Jaime Sanders turned to writing and became a national advocate for migraine sufferers.

Turning My Pain into Purpose

It was because of this isolation that I decided to start writing a blog to document my life with migraine. My goal was to connect with others living with migraine and to help break down the stigma associated with this neurological disease by sharing accurate and purposeful information and resources. I wanted to be transparent and honest about how debilitating and painful migraine can be, and I was hopeful that, through my story, others’ experiences would be validated.

I started by chronicling my experience with different treatments, the wins and losses, and how living with a chronic pain condition impacted my role as a mother and wife. I never expected that this online hobby would lead me to a much broader space in which I can now truly use my voice to uplift and empower myself and others. Advocacy and becoming an advocate started out small, with how I approached my healthcare. (see also, Jaime's experience advocating to Congress with Headache on the Hill.)

For example, going to the doctor used to cause me a lot of anxiety and I found myself feeling intimidated by my physicians. I didn’t feel confident enough to ask questions or to bring up new ideas. It wasn’t until a very traumatic event in my life that I decided all of that had to change. My voice mattered and, after all, I realized it is my body and how I choose to take care of it is paramount to my overall health. So, I started asking more questions, bringing up more concerns, and sticking to my gut with how I saw my treatments going forward.

I began to extend this approach into my writing, hoping that it would help empower other people to do the same for themselves. Learning how to create treatment protocols for the emergency room and hospital stays to treat intractable migraine was huge for me—and something I felt compelled to pass on to others. One of my very close friends who also has chronic intractable migraine told me about a DHE infusion protocol that her headache specialist created for her whenever she needed to go to the hospital (DHE is dihydroergotamine, a common prescription medication used to treat migraine in emergency room settings via injection or infusion). I asked her about it, and she told me what her protocol was comprised of. I sent the protocol as an example to my neurologist and asked him to draw one up for me for the times when I needed to be admitted for DHE infusions.

Now, I have a treatment protocol for whenever I need to receive treatment in the emergency department or at an urgent care center (other ways to communicate your chronic condition in the ER. The protocol is on my doctor’s office letterhead and provides a brief synopsis of my condition, what treatments I currently use and what has not worked in the past. It also lists specific medication dosages to use to help abort the migraine. It is signed by my headache specialist.

You can advocate from home, in your own way and in your own time. (Image: iStockPhoto)

Finally Being Heard

Having protocols like this in place not only save time but also help me advocate for myself in situations where, a lot of times, migraine is dismissed. These “rules to live by” have saved me from a lot of disappointment and frustration while also limiting the amount of anxiety I typically have when going to the ER for a migraine flare. This is knowledge I like to shout from the rooftop to anyone who is willing to listen.

Watch our live Q&A video featuring Jaime Sanders on Migraine & Mental Health

In 2016, I was approached to participate in a panel discussion about women and migraine at the BlogHer Conference in Los Angeles. This annual event is one of the biggest women’s conferences in the world. It was an amazing opportunity to share my story with others and to remind them that despite migraine, they still have value and worth.

From there, the floodgates opened, and opportunities started to roll in where I could speak about migraine and the patient perspective. Affiliations with organizations within the headache and migraine space started forming, exposing me to a wider knowledge and resource base to help grow my advocacy toolkit.

I have had the pleasure of participating in Headache on the Hill, an annual lobbying event that takes place on Capitol Hill to help raise awareness and funding for migraine research. I have joined panel discussions that range in topics from accessible balanced pain management to how migraine impacts daily life before an audience of House and Congressional staffers. Twice, I have been a keynote speaker at conferences for insurers, physicians, and advocacy groups, providing a great opportunity to share how migraine has impacted not only my life but also the millions of people who live with the disease as well.

Through partnerships with organizations like CHAMP (Coalition for Headache and Migraine Patients), HMPF (Headache and Migraine Policy Forum), SWHR (the Society for Women’s Health Research), and GHLF (Global Healthy Living Foundation), I have contributed to resources such as migraine patient guidelines, migraine toolkits, and a language and image guide to help reduce the stigma based on the type of language and imagery we use when talking about migraine and headache. Most recently, I have agreed to join this publication (Practical Pain Management) as a representative on its Patient Advocate Board.

Why Advocacy Is Meaningful to Me

Migraine has taught me a lot about myself. I have found where my strength and power lie within myself. Pain has given me a purpose which I never expected to come from it. I advocate because it is important to utilize my voice in a way where it will shine a light on everyone who lives with this disabling neurological disease. So many of us live in the dark, trying our best to navigate through life with an unpredictable and life-stealing illness. It is important that the world sees the true impact migraine has on the millions of people living with it, not only in this country but across the globe.

I will continue to lend my passion and expertise to build better resources and use my experience to help elevate the patient voice in any capacity I can. While I am on this journey to recovery and finding my optimal health, I intend to keep pressing on the path of raising awareness and validating others pain journeys. Being a patient advocate is hard but worth the results that come out of the perseverance and dedication it takes to wanting improved treatments, access to care, and better representation in the media.

You Can Advocate Too: Jaime’s Patient Advocate Takeaways

  1. You can advocate from home. Being an advocate doesn’t always mean going to your state capitol or legislator’s office. You can participate by writing op-ed pieces for your local paper, sending letters encouraging your Senator or Representative to sign on to a piece of legislation or by simply sharing helpful tools and resources on social media.
  2. Sign up for a local walk or race that helps raise awareness and funds for research. Miles for Migraine puts on several walk/run/relax events across the country. They also have great patient education days where you can learn more about migraine and connect with others in the migraine community.
  3. If you want to advocate on the federal level, the Alliance for Headache Disorders Advocacy holds an annual lobbying event called Headache on the Hill in Washington, DC. Patients, providers, advocates, and caregivers come together on Capitol Hill to raise awareness about headache and migraine and increase research funding. Applications go out in October, so sign up for their newsletter to get notified about when you can apply. 

Jaime spoke at the 2019 HealthyWomen Chronic Pain Summit. See PPM’s clinical coverage here.

Updated on: 06/19/20
Continue Reading:
My Day on the Hill for Headache Awareness