Headache on the Hill 2017

1:30 PM chronicmigraineellie 1 Comments


I am still running off of the adrenaline of HOH 2017 earlier this week. Headache on the Hill is an annual lobbying event by Alliance for Headache Disorders Advocacy. This year was the first time that I participated, but it will hopefully be the first of many.

It started on Monday, with a briefing session. We went over our "ask" for this year, which was to garner support for a bill that changes the language of CARA, the Comprehensive Addiction and Recovery Act, to increase NIH funding for chronic pain research. The end goal is to make opioids obsolete and to get funding to find better alternatives for pain drugs.  During the briefing session and the dinner after, I met so many amazing and inspiring patients and providers. For the first time in my life, I was surrounded by people who knew exactly what I was going through. I didn't have to explain why I was so tired, or stumbling over my words a little bit. I didn't have to pretend that I wasn't in pain. I could finally just be myself and talk about my pain and my experiences without fear of judgement, because everyone there knew exactly what it felt like to go through life with a chronic illness. Everyone at HOH was there because they are passionate about raising awareness and advocating for better research and treatment options. It was life-changing talking to so many people who just got it. I had conversations about food allergies, about how eating red meat actually makes me feel better and how I'm not the only one! There were no snide comments about what someone should or should not be doing or eating, just people's own experiences that they were sharing. For the first time since I got sick, I felt at home. I started this blog as a way to connect with other people, and it brought me to meet so many other amazing, inspiring people.  It was an amazing feeling to know that everyone who was at HOH was there despite their illnesses, fighting through their pain and symptoms because we all wanted to raise our voices to affect change.

On Tuesday morning, we met at 8:15 at the Capitol Building to take a group picture. Over 100 people, representing 38 states were there. In one day, we had over 160 meetings. My day started when my amazing partner, Sara, and I went to the Library of Congress. I had never been there, but as the nerd that I am, I got lost in the grandeur and the history. Being inside the main reading room and walking through the alcoves made me realize that I am capable of chasing my dreams. I had made it to D.C. despite a horrible day traveling where everything that could've gone wrong did and got almost no sleep, but somehow, here I was, on Capitol Hill. The coolest part of my HOH experience was the fact that I felt like I was actually affecting change. I've always been good about explaining migraines and migraine facts. This year, however, the AHDA changed our "ask" to be about chronic pain, not just about migraines. Chronic pain is something that affects almost 30% of Americans, and is a huge economic drain. Below, I'm going to attach a copy of our leave-behind, the document that we left with the Representatives and Congressmen that we met. Some of the facts are really fascinating, and I hope that you also can share these facts with your friends and family as well.

Our meetings went very well. It was exhilarating to talk to people about a topic that was not only personal to me, but also is a bipartisan and widespread issue. As Sara and I talked to legislative aids and representatives, we heard stories about their own families being affected by chronic pain. We heard about their own experiences with chronic pain. It was so evident that chronic pain affects millions of people in America, yet there's still a major stigma to talking about it and treating it. In one of my meetings, we talked about the problem of opioids, and how they became the first line of defense for pain management. While opioids work for some people and allow them to function, they actually can cause rebound headaches and cause other side effects with long-term use. Furthermore, so many migraine and chronic pain patients have trouble seeking help at ERs because they are labeled as drug-seeking even though they are just trying to get relief from the pain because nothing else has worked. Why is it that Americans are so reliant on opioids? Well, it's because there are no other alternatives. Think about it for a second. If you have major pain in your body that ibuprofen and acetaminophen aren't helping with, what do you turn to next? What do you do when the pain gets so bad that you can't function? More often than not, it's opioids.

I was able to tell some of my stories about my own experiences with opioids. I was in Chicago my senior year and had a horrible migraine. I was taken to Northwestern Hospital where they refused to give me any pain medication because I had taken a triptan 3 hours before. I was at a pain level of 10, couldn't speak, couldn't open my eyes. My parents were arguing with the doctor because they needed to do something about it. I was given an IV saline drip and a bed for 6 hours, where I slept it off. We were charged $1,000.  My experience with my blood clot was similar, where I was disregarded because of my age, and my pain was invalidated. I know that my experiences are extreme, but they are effective examples, especially when you only have a limited amount of time to convince someone to support your cause.

The entire day was completely draining. We spent most of our time running around the various buildings on Capitol Hill trying to figure out where our meetings were. It was the most that I had moved around in a while. By the end of the day I was mentally and physically drained. But it was so worth it. I met amazing people, had awesome meetings and participated in our political system. I completely crashed the next day and had a migraine. Again, it was so worth it. I am still buzzing from all of the adrenaline and happiness that came from those three days. I can't wait for next year's HOH. For the first time in a while,  I felt like I was in exactly the right place, doing the right thing. Being in politics was my dream from when I was a little kid. I wanted to be President. This week, I began fulfilling my dreams. Two years ago, I never would have thought I would've been in DC advocating. A year ago, it was a goal to be achieved in 5 years. Today, I am looking into the future with hope knowing that I can actually do this. If you are interested in participating in next year's Headache on the Hill, please reach out to me if you want to talk about it, or visit AHDA's website to learn more!

As always, have an amazing, migraine-free week!

1 comment:

  1. It makes me happy to know there are people out there advocating for chronic pain research. My father was cursed with chronic pain in his legs, preventing him from sustaining a job. We need more comprehensive research to really make treatment more effective.

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