A Migraine Journey from New York City to Costa Rica and Back: A Chat with Migraine Patient Advocate Danielle Newport Fancher

“If someone wants to advocate, they should do it – I highly recommend it. Know that it’s a hard role to have, but whether you’re advocating with people during your everyday life, with family members or with politicians, there are so many rewarding things that can come from advocating for people with migraine. There are a lot of us who are working very hard to continue communicating the migraine journey, and I am proud to be part of this incredible community.” 

–Danielle Newport Fancher

Editor’s note: This is the ninth in a series of interviews and podcasts with Migraine Science Collaborative editorial board members.

Danielle Newport Fancher is a writer, migraine advocate, speaker and author of 10: A Memoir of Migraine Survival. She has received awards from the National Headache Foundation and the Association of Migraine Disorders for her writing and advocacy. She is also a member of the Patient Leadership Council of the National Headache Foundation, and is a member of the Migraine Science Collaborative editorial board. In this interview, she speaks with MSC executive editor Neil Andrews to discuss her migraine journey, the problem of migraine stigma, and her advocacy efforts, among other topics. This interview has been edited for clarity and length.

Tell me about your migraine experience. When did you first start having migraines? What were your symptoms? And, overall, what was it like to have this experience?

I had my first migraine when I was 16 years old. I was leaving school one afternoon and I started to see a little spot in my field of vision. I ignored it, got in my car and then, by the time I was about halfway home, had complete aura in my vision. As a 16-year-old, not knowing what migraine is or what was happening was very scary for me. I literally created a traffic jam because I was stuck in an intersection and I couldn’t see anything.

I had a couple of migraines each year from about age 16 to 20. And then, when I was in college, around the age of 20, they became chronic; I was getting multiple migraines each day. It was very hard to function and concentrate on my schoolwork. Then, on October 2, 2013, I got a migraine that started like any other migraine would, but a couple of days later I still had it when I woke up in the morning. Months later I still had the same migraine, and now it’s been nine years of constant migraine pain that I’ve been enduring.

What was your experience like going through the healthcare system to get a diagnosis and treatment?

My mom had migraines in the past, so we were able to figure out pretty quickly that it could be a migraine when I first went through that experience at the age of 16; at least we had some baseline understanding of what could be going on. That was helpful for me, as a young person with this condition.

Danielle Newport Fancher

I saw a few different neurologists between the ages of 16 and 20, when I was having more, infrequent migraines. Where the challenge really came was during the phase when the migraines became chronic. I was in college and far away from a headache specialist. I didn’t even know the importance of seeing a headache specialist at that time. It took me a little while to figure out that I needed to travel to find the best care possible. I ended up coming into New York City regularly for neurologist and headache specialist appointments. But that’s a lot to put on a young person who’s in pain and trying to maintain her life.

Fortunately, I found an amazing doctor here in the city probably a year into my constant migraine. It’s a game changer when you find a neurologist and headache specialist who really “gets it” and thinks proactively about how to manage the pain. Finding the right care took some time, but once I did, I felt so appreciative.

Another aspect of your migraine experience is what you have described in your writing as running away from migraine and your life, in this instance by going to Costa Rica. Why did you go there, and what was the experience like?

A few years into my constant pain, I reached a point where I knew I could no longer function in my life. I was probably 25 at the time. That’s a really hard thing to accept when you’re a hard worker, someone who very much values their career, social life and independence. I felt that if I continued working and living in New York, I would almost be hurting my career because I just wasn’t healthy enough. I was in constant pain, nothing was working, and there was no clear solution ahead; I’d exhausted all of my efforts there.

So, I took a risk – and I’m so proud of myself for doing this – and decided to leave my job and take a break. What that meant was that I spent some time in Costa Rica, living in a little cabin on the beach, taking surfing lessons and a lot of meditation courses, and eating healthy. It was just me deciding I was going to give myself some time to live in a climate with consistent weather, in a stress-free place. Obviously, that doesn’t solve the pain – I was still in constant pain the whole time I was there. But the challenge of maintaining a career and all of my life goals in a fast-paced place like New York City was really hard while living in constant pain.

Being able to remove myself from that environment was invaluable. It did not solve the problem, as I still have constant pain. But to take a break like that and still be able to be back now in New York, back to my career, and not feel like I missed a beat feels like a real win. I feel lucky to have had the opportunity to take a risk like that.

As someone who has migraine, do you experience stigma?

One hundred percent. Stigma comes in a number of forms: in social settings, in the workplace, from family. And it’s not always a huge deal; it can be a little thing. So, in the workplace, it has been especially scary over the years to tell colleagues that I have chronic pain. For many years I hid it; I didn’t tell anyone. No one knew I had migraine, or if they did, they had no idea of the severity of it. I had experiences in the past where if I did open up about migraine, it was seen as a weakness – like I was doing something wrong – versus having an illness. The workplace is probably the hardest place to talk about my migraines and feel stigma, since you never want to feel like you’re letting your coworkers down or not pulling your weight. Throughout my career, I’ve made an effort to work at places that were accepting of my illness.

There is stigma in social settings as well. As migraine patients, we’ve all experienced the feeling of texting or calling a friend and saying, “Hi, I know it’s last minute, but I can’t make it tonight. I have a migraine.” And it’s in that moment where you don’t know if the other person gets it. Are they mad that you are canceling plans? Are they frustrated that it’s last minute? Do they understand that you did everything in your power to go, but you physically can’t do it? Or do they think you’re making up an excuse? So there are moments in social settings when you have to cancel or leave early, and you have to educate and make sure you’re surrounded by people who want to understand.

I’ve worked really hard over the years to educate people in my life and to be very thoughtful about the words I use to talk about migraine. I wrote a memoir about my experience, so if people are interested in learning about my migraine journey, I’ve created a resource for them and have had those conversations. I really do feel that in my work and social circles today, I’ve shifted the conversation and mindset significantly.

Why did you write your memoir?

There were just so many nights when I was awake in pain, unable to sleep, and feeling misunderstood. Also, I love to read, but I couldn’t find a character or a person that I related to in regard to my migraine; I couldn’t find that anywhere. I felt that was a huge miss because I know there are so many people like me going through this. But because we might not be as loud of a community since we’re all in bed at home, in pain, we don’t hear these stories as often. So I needed to share my story so that other people who are also awake at night, in pain, have something to look to so they know they’re not the only ones going through this experience.

I also felt it was important to have a resource or body of work I could share with my friends and family. I could say, “Read this – this is what my experience is like, this is what it feels like, this is what my journey has been.”

Tell me about your life with migraine now, and if you have found any treatments that help you.

Now, the bottom line is that, as I’ve mentioned, I am still in constant pain – that hasn’t gone away. But the way I’m responding to it has changed immensely. And I’ve come a long way. I’ve found some great medical providers and put a number of things in my migraine toolkit so that I have resources and options when needed.

Probably the most success I’ve found recently is with the CGRP [calcitonin gene-related peptide] inhibitors. It’s a huge win for all of our community to finally have medications being created for migraine and that are accessible. Other things I keep in my migraine toolkit are nerve blocks and steam showers, which help ease my pain. Having a full freezer of ice packs on standby is helpful, too. Also, I know that I have a network of people with migraine that I can call when I’m having a bad pain day or when I need advice on something. I’ve also made sure that my family and close friends understand what my experience is like.

So I’ve done a number of things to make sure, from a medical standpoint and a personal standpoint, that I’ve got tools to manage my pain, both physically and on an emotional level, too.

Let’s switch gears and talk about advocacy. You take part in an initiative called Headache on the Hill, which is an advocacy event where you and others meet with members of Congress to raise awareness of migraine and push for more research funding. What has your experience with this initiative been?

I’ve had the opportunity to participate in Headache on the Hill for the last three years, and it’s been an incredible experience but also an initiative that’s really making significant change for our community. When I’m writing my book or articles, or giving speeches, I’m connecting with people with migraine. We do all need to connect with each other – that’s the most important coping mechanism to deal with pain. But that’s only part of the advocacy journey. It’s also important to advocate outside of our community because that’s where a lot of the challenges come from.

Taking part in Headache on the Hill, I’ve had the opportunity to represent New York City, where I live in Manhattan, and to speak to our congressional representatives, to make sure that they understand the migraine experience. What’s cool is that we often go in with a group of medical professionals. They can talk about what they’re seeing at a more macro level and in their practices, and we can share our personal migraine stories. The impact is huge. We need to make sure that our illness is being taken seriously not only in our personal lives but also on a more public level, too, to get the funding necessary to make sure the migraine community is getting the right care.

Any other thoughts about advocacy? Any tips for people who might want to advocate?

Advocacy is the best thing I’ve done as part of my migraine journey. But there are two things I’d like to mention. First, I’m really happy that I waited until I was ready to advocate. I don’t think that years ago I was really ready to just jump in and be the voice of my community in this way. I had to figure out what I wanted to say, what language to use, and make sure I was very thoughtful about my delivery – because people are listening, and you might not have many opportunities to make an impact. So I’m glad that I waited and took the time to think it all through.

Second, advocacy doesn’t have to be talking to Congress. It can be a small conversation with a friend who unknowingly says something insensitive. In the moment, you can be an advocate and say, “Hey, you shouldn’t do that. It’s not appropriate.” That’s just a very small example, but advocacy can come in very small ways, too.

I hope I am making it a little easier for the next person going through migraine. I don’t want someone to be sitting in bed at night feeling that nobody understands their pain and that they can’t find solutions – that makes me sad. So knowing that I am doing everything in my power to share my experience in a very vulnerable and honest way feels really empowering.

If someone wants to advocate, they should do it – I highly recommend it. Know that it’s a hard role to have, but whether you’re advocating with people during your everyday life, with family members or with politicians, there are so many rewarding things that can come from advocating for people with migraine. There are a lot of us who are working very hard to continue communicating the migraine journey, and I am proud to be part of this incredible community.

To learn more about Danielle and her work, visit MigraineWriter.com or follow @MigraineWriter on Instagram, Facebook and Twitter.

Neil Andrews is a science journalist and executive editor of the Migraine Science Collaborative. Follow him on Twitter @NeilAndrews