Life Update: Looking Ahead to Headache on the Hill 2020 By Reflecting on the Past

11:13 AM chronicmigraineellie 4 Comments



It's been a while since I've written a blog here. In the past year, I wrote a thesis that got high honors, graduated college, moved to a new city and started a full-time job, all while navigating my life with migraine disease. I've joined Migraine.com as a writer and Lyfebulb as a patient ambassador. This past week, I co-hosted #MigraineChat with Beth Morton (My Counterfactual Brain) and talked about migraine advocacy. Since Headache on the Hill (HOH) is next week, I wanted to take some time and reflect on how I got here, some formative experiences and how lucky I feel to have a voice in the migraine community.

I stumbled into migraine advocacy. I started this blog because I felt alone and isolated in my experience. I started writing about my life - the good, the bad, and the ugly of living with migraine disease. It truly is a way for me to process what I've gone through in my life. To learn that there is an amazing community of support out there for people living with migraine completely changed my life. Walking into Headache on the HIll for the first time in 2017, I was overcome with emotion being around people who understood the daily struggles and pain that I live with. For once in my life, I didn't have to pretend that I was okay.

Last year, I was in a meeting at HOH2019 and I got a migraine attack in the meeting. I was having trouble putting words together and was beginning to get upset that I was failing to do what I had traveled so far to do. But Kevin Lenaburg (CHAMP) picked up on what was going on and told the staffer, "This is an example of what happens during a debilitating migraine attack." Even though I was frustrated with myself, that moment made me realize the importance of education even more than I already knew. Migraine is a misunderstood condition. Not many people realize how debilitating and life-altering that it is. And while I was embarrassed, my very apparent disability helped prove our point in that meeting that for people living with migraine, your ability to function can disappear instantaneously with an attack.

In the past 4 and a half years, I've tried to change the narrative and stigma in my daily life surrounding migraine. Looking back at three years of advocacy, participating in workshops, writing online and having discussions with people, I am always surprised when people outside of the migraine community tell me that I am inspirational and have helped them understand a bit more what it's like to live with migraine.

So much of my life has been defined by the negative experiences I've had. The times that people fail to understand the daily level of pain that I go through because they can't see it, and I "don't look sick," when others have flat out told me that I would never achieve anything because of my disability or can't have accommodations because they're not "fair" to other people or aren't included in my benefits. But I am not their negative perceptions. In fact, the people that live with migraine are some of the strongest and most resilient people that I know. We go every day living in excruciating pain and somehow, still are able to keep fighting through.

At the end of the day, our power comes when we speak up collectively. There are over 40 million people in the United States who live with migraine. Many of us have comorbid disorders or live with other pain syndromes. Not everyone will understand what we go through, but if we continue to lift each other up, we will get there.

I took a break from blogging because I had to figure out who I am and what I am doing. I needed to adjust to working in a full-time job, navigate migraine days at work, and the emotional and physical toll that comes with those experiences. Furthermore, I felt embarrassed that I was having so much difficulty. I kept thinking, how can I be an advocate when I'm not even getting the accommodations that I need? How can I claim to be educating people when I feel like I'm failing to be transparent and educate people in my workplace?

I realized that I was doing myself a disservice by downplaying the severity of my migraines. My bosses knew that they hired someone with chronic migraine, but didn't know the full extent of my severity because I didn't share it with them. They still don't fully understand what I go through, but now I am trying my best to be more transparent with them about what I go through. If I keep pushing myself silently, they don't know what is going on. Even though I'm scared, I've begun making a concerted effort to tell them when I am not okay and when I do need to go home. I was telling them the other day about how there's a shortage of headache specialists in the U.S., which is why I've been having issues getting a new doctor in my new city. They were shocked, and couldn't believe that it's only 1.2 specialists per 100,000 people with migraine. That's a six-fold disparity.

Yet as people living with migraine, we know this. We know how hard it is to get an appointment, and how hard it is to get care when you actually need it. We know how hard it is to get insurance to cover our medications, to get bosses to give us reasonable accommodations that we are entitled to, and to live our lives in an environment full of triggers. But somehow, we still do it.

In 2020, I'm going to continue my advocacy work to amplify the experiences, struggles and policy barriers that people with migraine experience. In the past couple of months when I was not writing, I  was trying to figure out what I can contribute to the migraine community and where my voice fits in. I'm going to continue writing about my life, but I also want to start writing about the work I've been doing in health policy and the knowledge I have there. I believe that if I can provide some background on what's currently going on with Medicare and Medicaid, public options, telehealth and social determinants of health initiatives, I can help some of you understand the fractured system that we live in a bit better. If this is something of interest to you or you'd like to discuss a specific topic,  please reach out to me through email or on social media.

I'm excited for Headache on the Hill 2020 next week as well. Let me know if you're going to be there! I'll write a blog after talking about our ask and my experiences.

Until then,
Ellie

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