Fibromyalgia Advocacy Day took place in Washington, DC on September 19, 2019 and was well received by the Congress staff, participating advocates, and the overall fibromyalgia community. Overall it was a successful trip and we are gearing up for next year’s Advocacy Day! Here are some photos from this year’s trip, how we prepared for it, and what you can expect should you want to participate in the future.
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The Backstory of Fibromyalgia Advocacy Day 2019
The core reason of Fibromyalgia Advocacy Day was for fibromyalgia patients to meet with their state Senators and Representatives to tell them about fibromyalgia (awareness) and to ask for specific changes needed in the fibro community (advocacy). Since both houses of Congress were in session, state constituents (state residents) met with the Senators’ and Representatives’ staff members.
Each fibromyalgia thriver at the Capital had their own reasons for being in DC for Advocacy Day. Our stories vary, but the changes we asked for was common:
We need a more defined diagnostic criteria in order to receive a quicker diagnosis to begin healing. More importantly, we need increased funding for medical research on fibromyalgia to receive better education for patients and providers and more effective alternative treatments.
Fibromyalgia Advocacy Day 2019: Photos and Behind the Scenes
An Idea Turned Into Reality
The idea and drive for an Advocacy Day for fibromyalgia was made by Melissa Talwar, executive director for the International Support Fibromyalgia Network. What started as a challenging goal for our organization, soon turned to reality – and later a huge success – as Melissa was determined to make this enormous stride towards improvement for fibromyalgia patients and our community.
Melissa sporting her shirt at one of the events she attended prior to Advocacy Day –
To say it wasn’t an easy task is a dramatic understatement. There are various pieces to coordinate an event on this scale at the level it was done. In addition to figuring out the logistics of meeting with Congress staff, there are numerous steps to get to that point. It’s not a simple act of scheduling meetings and – POOF – it’s done just by advocates showing up on the day of. No, no, no. There’s much more to it than that.
Telling Others About It
In order for there to be a Fibromyalgia Advocacy Day, people need to attend. These people include fibromyalgia patients, caregivers, and advocates. We needed to get the word out about the day and let others know how they can attend either in person or online.
Melissa and graphic designer, Mike Mondragon, worked together to create a visually appealing graphic that would be used for t-shirts, postcards, buttons, and other media items. The finishing product is quite stunning!
Suzanne and me sporting our Support Fibro shirts –
A week or so prior to Advocacy Day, Melissa, Suzanne (blogger at Fibro Mom Blog), and I filmed a live video to rally for the big event. We informed viewers of who would be representing their state for the staff meetings, the upcoming itinerary for training and meetings, and answered questions viewers had about the event. Overall, it was a fun way to get ready for the big day!
Getting to Advocacy Day
As we got the word out about the upcoming event, more and more people became interested. There were many questions regarding lodging, itinerary, training, and more. I know the overall process of being involved seems to be intimidating and overwhelming, but I assure you that it is not nearly as cumbersome as imagined.
The most difficult part of this trip for me was finding someone to care for my children while I was gone for the week. Honestly, I was nervous about the entire trip, but this was the only difficulty I encountered. And it wasn’t even that much of a difficulty, really. My mom stayed with the kids while I was gone and that was that. The rest of the trip was a breeze! (And LOTS of fun!)
My essentials with packing (and I found a purple suitcase with gliding wheels and easy to grip handle!!) –
In the weeks leading up to the event, I wore my Advocacy Day shirt as much as possible to get the word out about the event. I also pieced together a wardrobe for the trip, got a suitcase, and prepared a list of items to take with me on the day I flew out.
Two Days Prior to Advocacy Day: Meeting Everyone
Two days before the event, I flew to DC to meet up with the other advocates at the hotel where most of us were staying. It was so much fun meeting all these amazing advocates I had met online since I started this fibromyalgia journey years prior!
One Day Prior to Advocacy Day: Sightseeing and Training
The day prior to Advocacy Day, a group of us went sightseeing around DC. We visited Arlington National Cemetery and had lunch at Ben’s Chili Bowl. (Pssst…if you ever get a chance to eat at this place – do it! It’s amazing! The backstory to the restaurant is interesting, too, and can be read in the photos below.)
In the photos below:
- Ted Hutchinson, gamer and founder of That Gaming Dad
- Melissa Swanson, blogger at Fibro Warriors ~ Living Life and author of Ravyn’s Doll: How to Explain Fibromyalgia to Your Child
- Norman Hanley, blogger at Men with Fibromyalgia
- Debbie Nunez, founder of Chicagoland Fibromyalgia & Chronic Pain
- Suzanne Kopecki, blogger at FibroMomBlog
- Julie Ryan, blogger at Counting My Spoons
- Meshea Cyrup, blogger at Fibro Life
- Rob Castellanos, founder of Syndio Health
- The Mata Sisters – Aracely Mata, Juana Mata, and Estela Mata, founders of Looms4Lupus
Training was held at Busboys and Poets which is a unique little community gathering place. Their story is inspiring and the restaurant itself is breathtaking in so many ways. I loved the little bookstore there as well.
The dinner was catered by Busboys and Poets complete with a gluten free menu option. Yay for me!! It was delicious and perfectly filling. They even have a gluten free dessert option, too!
After dinner Melissa and I introduced ourselves to the group of advocates and reminded us all why we were gathered and the drive behind Fibromyalgia Advocacy Day.
This was followed by training which was a short, informative presentation given by Prime Advocacy organizer, Lincoln. He told us the ins and outs of Advocacy Day, what to expect, what to do/not do, and how to get the most out of our meetings. It was a huge help!
At the end of the night we presented each attendee with a certificate.
Fibromyalgia Advocacy Day
Let me say first – there is a LOT of walking involved with Advocacy Day. I strongly encourage to have any mobility aids with you should you attend Advocacy Day in the future. Capital Hill is BIG and meetings are not able to be coordinated with location in mind. Meetings are scheduled as they are available (and fill up fast).
On the bus headed to Capital Hill at 6 am and the gorgeous sun rise from the bus-
Despite the walking, there are lots of places to take breaks, eat, hydrate, and – most importantly – have FUN! Karen and I were paired up to represent the Carolinas (Karen is a coach and consultant from North Carolina; I am from South Carolina). We took lots of breaks, ate when we could, and carried water with us. We fully enjoyed the sites and took as many photos as we could.
As we got started –
We had breakfast and looked over our notes before our first meeting of the day. The breakfast was the perfect way to get started on our busy day of six meetings!
Lots of meetings and we took photos outside each Congressmen’s office –
Other groups were also enjoying their time and taking photos along the way –
We took photos as we walked from meeting to meeting. It was a lot of fun being tourists while accomplishing something meaningful.
The cafeteria in the Senate was AH-MAZING!! Of course, me being me, I had to take photos of the dessert bar. haha
At the end of the day, we all convened in the hotel’s restaurant to share our day’s activities and exchange any useful information.
One of my dearest friends drove an hour to come visit me while I was in DC. I hadn’t seen her in a couple years, so it was a lot of fun hanging out with her for the evening.
The Day After Advocacy Day
Each day and night leading up to Advocacy Day, I ate ‘clean’ meaning I avoided my trigger foods and hydrated appropriately. I also rested as much as I could before, during and after the event. The week afterwards, I did experience a small flare, but it would have been worse had I not planned accordingly.
I flew home from Baltimore airport on Saturday. The night before my flight, I soaked in a bath and read with my legs up to prevent any further soreness.
I found some cool stuff at the airport, too!
Overall, the event was a huge success and we were already making plans for the next Advocacy Day before we all flew out. I was sad to part with everyone I had met during the trip. Forging online friendships has been an integral part of my illness, and I value these friendships very much so. However, meeting them in person took that friendship to a more valued friendship. I look forward to more meetings in person with all these incredible people!