Migraine Advocate Receives AHS Distinguished Service Award
What a pleasure to be in attendance at the International Headache Congress (IHC) in Boston to witness the American Headache Society (AHS)present patient advocate and educator Teri Robert with an award for Distinguished Service!
Telling her, “Congratulations,” for being the first patient advocate or non-physician to receive such an honor during the world’s most prestigious gathering of Migraine and headache specialists just seems so insufficient. So, I’d like to tell you a few reasons this means so much – to her, but also to the advocates, patients, doctors and researchers who work with her:
When advocate/educators like Teri and I attend continuing medical education conferences, we learn side-by-side with the top physicians and researchers in the world. We are not however, eligible for membership in the AHS because, despite our participation in special committees such as ACHE and the AHMA board of directors, we are not licensed health care practitioners. The conferences and scientific meetings in which we participate are not designed for patients. In fact, patients are generally not encouraged to attend for several reasons, only one of which is that there is little chance they will understand the highly detailed scientific discussions held there. Our jobs are not only to understand what is said, but to translate that into language and ideas that an average patient or family member can grasp. There was a time not long ago that educator/advocates were not included in any way in physician organizations such as the AHS, nor acknowledged as colleagues in working with patients, let alone encouraged or awarded for their work with patients.
Teri was active online before it was really even available to the general public. As such, she really broke difficult ground for patients when she decided to begin sharing what she’d learned to other patients and groups online. Being an effective advocate is a skill that must be learned and practiced. Knowing and using the tools that make us effective takes time and a willingness to take on yet another project, and Teri takes this on with enthusiasm, not only asking questions of others so she can learn more, but passing that forward to others who want to learn too. She’s fabulous at networking!
Online activities are still at best, thought of as a hobby, or at worst, a waste of time. Despite the stigma of spending hours on a computer every day, Teri was among the first to begin breaking that stereotype to begin helping to build the road that would eventually define across health conditions, what a patient educator/advocate even is.
One of the best things she did was to break into the world of CME courses. I can’t imagine what it must have been like in the early years showing up as the only patient in a conference full of the amazing and brilliant people we now know and love. It’s a bit like showing up backstage at a rock concert, put on by rock stars for rock stars, and being the only non-musician there. But she’s nothing if not determined, and she was brave enough to do what most of us didn’t dare try – she walked into a world that was unfamiliar and conquered it, then shared that world with everyone else.
I don’t know what they thought of her then, but I think I have a really good idea of what they think of her now. The hugs, kisses and tears she shares with the doctors and researchers there tells that story well.
In the last few years, advocates have begun to work together themselves and in conjunction with physicians and researchers for the betterment of patient treatment and education, and Teri has been a big part of that happening. Patients too have begun to get braver about becoming active in ways that help the entire community, looking to the advocates she has inspired and using education and compassion to help their peers. Teri shows them by example how to get tough when needed by reminding us it’s sometimes necessary to, “Fire his sorry butt,” or remember, “The person with the most at stake gets to be in charge.” Pay enough attention to her and you’ll learn ways of standing up for yourself, even though you are living a difficult, medically challenged life.
Last year, not only did she take the reins and convince the entire community to accept purple as the color for Migraine and Headache ribbons and awareness, but led a small group of advocates and doctors who worked together to form the American Headache and Migraine Association (AHMA), which was her brainchild. She has inspired enough doctors and patients to work together that this group may have eventually been possible without her, but she led the charge and made it reality today in ways I can barely imagine. Please don’t assume this is the only organization she has helped to found for better lives for Migraine and Headache patients either!
It’s easy to talk about something, but watching her will things to fruition in days what takes the normal human weeks or even months to happen, was like watching a whirling dervish! Get caught up in the whirlwind and it sucks you right in before you even know what hit you! She isn’t paid for any of this and has no other motivation than her passion, but does this so we all as patients can live better lives.
On a personal note, I’ve watched and sadly felt some of the backlash she experiences from some of those with an agenda (usually financial) who are new to the scene and don’t know what she and others have done to pave the way before them. I can tell you, when an advocate personally puts their lives and their name *out there* for the world and it is targeted and flung back at them, twisted and framed in deception, falsehoods and nonsense, it is difficult to dust yourself off and continue. Despite this shameful activity designed to hurt her and other advocates, she picks herself up and continues encouraging. She’s been doing this for about 13 years now, and is not about to leave patients behind by quitting.
I was proud to be in the audience as the AHS President Dr Elizabeth Loder and Dr. Kethleen Digre told us how happy they were to have her standing with them, and how much they appreciated her service. I don’t know if they have any idea how this award affected the advocates present, but I know Teri does. It gives everyone a feeling of accomplishment because we can see that all who have served are appreciated and respected. Because she represents advocates and patients, this says much about our place in Migraine and Headache medicine as well as the things that are possible working cooperatively with doctors and researchers. It also reminds us how far each of us can go when we are determined enough to make something fabulous happen.
Live your best life,
© Ellen Schnakenberg, 2013.
Last updated July 19, 2013.