Community, Society

What to Expect at Headache on the Hill

If you’ve never attended Headache on the Hill, your first time can be a little intimidating. Knowing what to expect goes a long way toward reducing nervousness. Here’s what my in-person experience was like last year. Since this year will be virtual, I spoke with Katie MacDonald from the Alliance for Headache Disorders Advocacy about the differences, which I’ve noted throughout the post.

The “Ask”

The HOH leadership works ahead of time to determine what “asks” are likely to be most effective. Last year, we asked for legislators to sign onto a bill supporting funding for additional funding in training providers for the specialities of pain management and more fellowships in headache medicine. We will have different asks this year.

Pre-Event Training

Note: All training in 2021 will be virtual, of course. Some sessions will be recorded so you can watch on your own schedule, others will be live sessions so people can ask questions in real-time and work together. If you have been accepted to participate in HOH, you should have received an email with the training details.

At a webinar a week or two before we flew to Washington DC, the HOH team told us about the asks, shared background research, and gave pointers on telling our own story. Then we were told to think about our story that we’d share with legislators. (Your story should be about a minute that explains why you care about advocating for headache disorders. It doesn’t have to be perfected ahead of time, but is good to think about.) This will all be covered in the virtual training this year. 

Training Day

The first day of the event last year was a training where we learned about how to make effective “asks” and practiced telling our story in small groups. This will be on either March 17 or March 20 this year. Attendees were grouped by state. Because Arizona was a large group with seasoned HOH attendees, we also had the lone person from Indiana with us. (He didn’t have to visit legislators offices on his own, an HOH volunteer worked with him, but our grouping was helpful for training.) We were given the names of the legislators we were to visit and the schedule. 

We decided as a team how we wanted to frame our ask and who would speak when. At least three of us spoke at every office we visited—no one had to carry the weight on their own. If the representative from your district is one of the people you’re scheduled with, then you’ll definitely be asked to tell your story. We all introduced ourselves at every office, though, usually to say our names, where we’re from, and our connection to HOH (I said I live with chronic migraine and work as a patient advocate).

This year, it’s recommended that you try to arrange to attend the live virtual training (on March 17 or 20) with the people from your state, if possible. That way, you can have the same benefit of coordinating and learning from the expertise of previous attendees. If you don’t know who is attending, you can ask in the HOH Facebook group. (Depending on your specific meetings and how many people attend from your state, groups may be smaller than every person from the state. Exact groups won’t be known until all the meetings are scheduled.)

Meetings With Legislators

The day of, we started early. I think the first meeting was 8 a.m. Eastern time and we had to meet even earlier to catch the bus to the Capitol and take photos. (This won’t be an issue for this year’s virtual meetings, as they will be scheduled to respect the time zone participants are in.) 

Then we went from one office to the next. We usually talked to the legislator’s chief of staff or their health legislative assistant. They were often young and almost all of them were kind and down-to-earth. And they were curious about our experiences and wanted to hear from us. It was comfortable and not intimidating. Most told us about someone they know with migraine, which was a great personal connection. I believe we may have even asked if they knew someone with migraine. Beforehand, we designated one person to tell their story and one person to take the lead on the ask. As the conversations went on, other people chimed in. It felt like natural conversation. 

Even if you don’t get to meet with the actual member of Congress, don’t feel like you’re being snubbed! The staffers we meet with are most knowledgeable on health-related topics and their opinions carry a lot of weight with their bosses. 

Post-Meeting Debriefing

After each meeting, we debriefed together and filled out a short form about who we met with and how they responded. We also had taken photos with each person we met with and shared those on social media. The post-meeting activity will be a little different this year, since it’s virtual, but the platform will still allow for it.

After All the Meetings

New this year will be a live virtual gathering after the event for everyone to share their experiences. This is a fun advantage to having a virtual HOH. After the in-person meetings, most people went back to their rooms and went to bed early. It is a long day with a lot of walking, especially for people with headache disorders. Having a chance to all connect afterward will be a great bonus.

Coping

What was good about your day?

After noticing that our evening conversation usually ended up in a muddle of work-related details that neither of us really wanted to rehash, Hart and I changed the daily conversation by changing the question we ask each other. Instead of asking how each other’s day was or what happened that day, we ask what was good about the day.

We noticed a change immediately. Instead of digging into the nitty gritty of the day or focusing on frustrations, we’re both cheered by talking about the good parts of the day. If either of us encountered a major frustration in the day, we still talk about it, but the small irritations rarely get air time. The whole tone of the evening feels different when we start by sharing the good parts of our day.

Although we made this change years ago, it’s been particularly valuable in the last year. When daily life has a constant high-stress undercurrent (with spikes of even higher stress), it can be hard to see the bright spots. Sometimes we have to look extra hard, but we always find them.

I’ve taken to asking friends this same question, usually by text, and it’s been a great way to connect. I started with a friend who has chronic migraine and was going through a particularly rough spell with depression and anxiety on top of it. I know how hard it is to see the good in times like that and was worried she was bogged down by the grief. She appreciated the prompt to look for something positive in the day and now regularly texts me the same question. Sometimes it’s hard to answer, but I’m always grateful for the reminder to look for the good. And now I regularly ask the question of even more friends. It’s a great way to connect and usually provokes a smile.

Why am I telling you this today? Yesterday was a hard day for both Hart and me and we forgot to ask this question. Talking about what was good about our days wouldn’t have negated the bad parts, but we both could have used the levity. I missed it and I felt the heaviness even as I went to sleep. I can’t know for sure if I would have felt lighter if we’d remembered to tell each other the positive parts of our day, but experience shows I probably would have.

What’s been good about your day today?

Photo by Aaron Burden on Unsplash
Coping

I am: Identity and chronic illness

The emotional weight of migraine has been especially heavy for me in the last month and, really, in the last year. The morphing and unrelenting stress has ratcheted up my migraine attack frequency and the attacks often include depression-like symptoms. My thoughts have swirled around how small my life feels and how much unrealized potential migraine has left me with.

It was the perfect time to watch In & Of Itself, a film adaptation of an off-Broadway show that’s now available on Hulu. This description from Linda Holmes on NPR is better than any summary I could write: “It’s about seeing people and being seen by them, and about how your own narrative of who you are — I AM a novelist, I AM a gamechanger — collides with stories about who you are that you didn’t get to write.”

“I AM” in the quote refers to cards that audience members choose at the start of the show. They are arranged on a wall and include an array of identities a person could align with: tourist, organizer, leader, mother, life of the party, entomologist…

As the identities came up throughout the show, I couldn’t help but wonder which I would choose. Truth-teller, resilient, and authentic were top of mind. But then I thought about what identities others would choose for me. Would sick be at the top of the list? It feels these days like that’s all anyone can see of me. Or is that illness feels like it dominates my life and because it’s all that I see of myself, I’m projecting that onto everyone around me?

I know that if I asked my loved ones to describe me, sick wouldn’t be the first thing anyone said. It would be present, but as an addendum. They’d say I’m a kind, driven optimist whose ambition has been constrained by migraine. Or that I’m so resilient and determined that I’ve learned how to live as well as possible despite the many challenges of chronic migraine. I know this because people have told me so. And yet.

Even though I do believe them, the pall of migraine covers everything right now. I am not migraine. I do not want to be defined by migraine. I felt like I had a good grasp on the difference between migraine and me when I wrote about this very topic on Migraine.com in Is migraine part of my identity? Yet, here I am, just a few months later, feeling flattened by migraine once again.

In & Of Itself reminded me that I am a mass of beliefs, thoughts, concepts, identities. Who others perceive me to be is shaped by their beliefs, thoughts, concepts, identities. No one is only one piece of their lives. No one is truly who others perceive them to be.

I cannot only be migraine even when it feels like it is all that I am. I cannot tell my story without all the pieces of me speaking up. I wouldn’t be sharing my experience with migraine so openly if I weren’t a truth-teller. I wouldn’t feel so connected to my authenticity through words if I weren’t a writer. I wouldn’t have found contentment (most of the time) in a life with chronic migraine if I weren’t so driven (that trait that I grieve being unable to apply to the career I wasn’t able to have).

My therapist would say “I am” is the most important part of the cards. What follows doesn’t matter. We are all worthy of love and belonging simply because we are. That’s where I’m trying to put my thoughts today instead of being bogged down by the details.

I am.

I am.

I am.

Photo by Kristina Tripkovic on Unsplash
Coping, Treatment

Free online course in migraine management begins Jan. 16

Imagine reducing the severity of your migraine symptoms and/or the intensity of your distress during a migraine attack without medication. Now imagine learning the skills to do so in a free course that you can take from the comfort of your own home.

The Resources for Migraine Management course, offered by the Danielle Byron Henry Migraine Foundation, can help you do exactly that. The free e-course begins this Saturday, January 16. (Registration link: Resources for Migraine Management virtual course registration)

What the Course Teaches

A 10-session online course, Resources for Migraine Management teaches a variety of biobehavioral treatments for migraine management. Each session will teach different methods for managing migraine symptoms and the associated stress and anxiety.

The goals of the program are to:

  • Teach relaxation techniques
  • Teach pain management strategies
  • Learn how to better cope with distressing thoughts and emotions
  • Build resources for greater resilience

About the Teacher

Dan Kaufman, PhD, a research assistant professor in neurology at the University of Utah School of Medicine, teaches the course. A scientist might seem an unusual choice to teach the course, but the story of how he got here is persuasive. In his scientific research on migraine, Dr. Kaufman became curious about the experience of people living with the condition. As he spoke with people to learn about their perspectives, he was compelled to offer help that was more direct than scientific research. He began training in biobehavioral therapies for migraine, which led to him opening a private practice to teach these therapies and, ultimately, to offer this course.

Firsthand Experiences

One woman who participated in last year’s class recently reported that, for the first time in years, she has been migraine-free for months and that her anxiety is virtually gone. While these results aren’t typical, it’s a stunning example of the potential effectiveness of biobehavioral techniques.

While I didn’t take this particular course, I have learned many of these techniques over the years. After the events of 2020 stirred up my stress-triggered migraine attacks, these methods helped me return to my migraine baseline and cope more effectively. They have also been invaluable in teaching me to cope with the onslaught of migraine. Living with chronic migraine is still hard and frustrating, but it is so much easier than before I had these strategies.

Course Logistics

The next class begins on Saturday, January 16. Sessions are on Zoom on the second and fourth Saturday of each month from 1 to 3 p.m. MST. Each one teaches you new skills that build on previous sessions. Classes include opportunities to practice the techniques and get feedback from the instructor, so attendance at the scheduled times is preferred. However, if you’re unable to attend a session live, recorded sessions will available so you can catch up.

Registration

Here’s the link to register: Resources for Migraine Management virtual course registration.

Photo by Oliver Augustijn on Unsplash

Society

Join me at a Virtual Headache on the Hill 2021

Headache on the Hill 2021 will be held virtually March 22 & 23, 2021. If you’ve wanted to attend, but the travel and long days kept you from participating, here’s your chance to attend without leaving your home!

My Experience With Headache on the Hill 2020

Headache on the Hill 2020 was my first time attending and it was an incredible experience. Taking my passion for helping people with headache disorders to lawmakers was exhilarating. And I got to connect with other people in my state who have headache disorders. I learned so much from them. Although COVID was declared a pandemic less than a month after HOH, which pushed our “asks” aside, it was still a worthwhile experience.

About Headache on the Hill 2021

In 2021, Headache on the Hill promises to be less grueling since we won’t be traipsing all over Capitol Hill. Being virtual will also allow more people to attend, thus expanding the number of representatives we can reach. Day 1 will be an online training where we’ll learn our “asks” and plan our approach with others in our small group. Day 2, we’ll meeting with senators and representatives (the number of meetings depends on their availability and how many people in your state attend). I’d love for you to join me!

Apply for Headache on the Hill 2021

To apply, email: info [at] allianceforheadacheadvocacy.org. Let them know what state you live in and that you’re interested in attending. If there’s availability, you’ll be sent a link to the application, which is due Friday, January 15, 2021.

Please don’t be intimidated by the need to apply. The application provides background information to get a good mix of representation at the meetings and to know which representatives to schedule with. Although the application asks for social media information and advocacy experience, neither are required to participate. Be yourself and don’t overthink it!

Questions?

If you have questions about participating in Headache on the Hill, please ask! I don’t know much about the logistical details, but can share what it’s like to be a participant. For logistical questions, email info [at] allianceforheadacheadvocacy.org.