Migraine and Headache Awareness Blog Challenge 7 – “Changing the World”
Migraine and/or headache patients are powerful, much beyond what we believe ourselves to be. There are so many ways, big and small, that we can work to change how the world views our disease.
Sometimes, migraineurs who have mild attacks need an education even more than those without migraine so they understand the truth about migraines.
I am no different than other patients. I'm actually worse than most, so even sitting today to write this post is a major challenge that will likely take me hours to get right. Anybody could do the things I do. ANYBODY.This means you too!
My question is, why do migraine patients do so much "letting the other guy" instead of getting involved? Getting involved has changed the faces of breast cancer (I remember when you couldn't talk about this without whispering in private), prostate cancer, Alzheimer's, Autism, mental illness, just to name a few.
So, what have I done that readers here could also do to make things better for us all? If I may, let me count the ways - both little and big.
I paid back the help I've gotten with my health issues, helping others by:
- Joining forums and groups and beginning to answer questions with which I had experience myself, or for which I had some answers or comments. Often this meant simply showing a patient where they could find the information themselves. Sources their doctors could trust. I was even an early member of Health Central under the (no longer used) username AntiquityHill.
- Identifying myself with my actual name and photo. I decided that, if patients were going to tust me, they needed to know I was a real person and a real patient. Giving up my anonymity was tough because I really didn't want the world to know the things I was living through. It was necessary for me to have as much stock in what I was saying as those who were listening though. It also adds another name and additional links when you Google migraine or chronic migraine. I am one more penny in the change jar.
- Helping connect patients together who could support each other.
- Becoming an encourager, and a place where others could rely upon for sourced, correct information they could take to their doctors.
- Helped every day, to teach and mentor others who wanted to advocate for themselves and others.
- In addition to my nominations and awards for blogs and videos with three large health websites, I created a blog called Migraine Interrupted, which remained private for several years. It has recently been opened to the public to read and respond, and will be rebuilt soon with a newer, sharper look and feel.
- Became part of several teams of advocates, sharing and brainstorming so the community at large could receive the best of all our maximized ideas.
- Stand for patients by speaking face to face with physicians and legislators in Washington DC during the Alliance for Headache Disorders Advocacy (AHDA) annual event – Headache on the Hill, helping them to understand the needs of headache and migraine patients. We were successful and several changes have occurred as a result. This activity is open to patients and doctors.
- While not open to all patients, I began attending physicians CME conferences to stay up to date on the latest and greatest information, and get to know the people in the world who had also devoted their lives to making a difference for patients.
- Helped found and am Chair-elect for the American Headache and Migraine Association (AHMA) - an arm of the migraine and headache physician's organization The American Headache Association (AHS). "What's best for the patient" has become a mantra. We work together within all aspects of migraine and headache advocacy and education, not the least of which is the creation of a national yearly patient conference that allows patients to get some of the same information that is discussed during regular AHS physician conferences, by listening to the world's top doctors and researchers, in person!
- Designed and helped create an awareness video full of the faces of Migraine patients, and real life shocking statistics about those patients. Designed and began creating a website which will involve others in creating other awareness projects designed to be used by anyone looking for more information on migraine and headaches. I was celebrity struck when some of my favorite world famous docs thanked me, even using its link in someone's signature! It can be found at FacesOfMigraine.com
- With the help of a teacher and the Faces of Migraine video, introduced the truth about migraine to school students in a classroom setting, and the beginning of the design of a short curriculum for teachers to use in several settings. Stay tuned here for more about that stigma busting project to come.
- Worked with the Department of Army within the Department of Defense to help determine which research projects would receive specific federal funding for 2014. I was nominated by the AHS and was excited to be giving the patient perspective for such an important cause.
- Became extremely active on Facebook, Twitter, Stumbleupon, Pinterest and many other social media platforms, making sure reliable information was making it online for patients to find, hoping to bury the unreliable or outdated information so many patients and even doctors were unfortunately depending upon.
- Became active in sharing others' online migraine discoveries and creations, again, hoping to bury the bad and outdated information.
- Began publicly calling out the bad websites and web pages so patients don't accidently land on them and are misled. This includes some EXTREMELY well known television personalities. Fortunately, it resulted in the changing and removal of some incorrect migraine information that untold numbers of patients and non-patients were assuming as fact from these trusted people. I have a brand new "Call-Out" Pinterest board and beginning July 1, be watching for some seriously stinky bad places to avoid online, and make a real difference by helping share the stinky links and complaining with a purpose!
- Talking to people I see who are obviously migraining, helping to educate them with basic information most had never even realized existed.
- Am an ambassador for the United States Pain Foundation, promoting calls to action in the chronic pain community.
- Sharing and signing important petitions to encourage our legislators to become educated and take migraine and headache more seriously.
In other words, I started as a patient, desperate for help, and eventually became a patient advocate and educator, both professionally and in my day-to-day life.
My goal today is to make sure that everyone reading this understands, these are things they can do too! Okay, not all at once and not all the time. I'm in bed most of the time now and depend upon a borrowed laptop and the love of my pets to keep me going through my isolation. I use my negative feelings when I get discouraged, depressed or angry at my diseases and situation, to fuel my work. I feel much better when I'm distracted, and doing these things is an awesome distraction!
My challenge today, is for every reader to try their hand at just ONE of these things. Try it once, or for a week, or a year. Just give it a try. Adding your voice even once helps those who need to understand, hear and understand that need. It lowers stigma. It removes isolation. It gives purpose. It creates passion. All the things we need to live our lives the very best we can, with migraine.
Please share these awareness posts with others who may not understand what life is like with migraine and other headache disorders. A spark requires oxygen so it can grow into a wildfire, and you are the breath of this project. With the wildfire of awareness comes the hope of reduced stigma and better, targeted treatments for these misunderstood disorders.
“Be the change you wish to see in the world.” ~Ghandi
Live your best life,
Make a difference... Donate to the 36 Million Migraine Campaign!
© Ellen Schnakenberg, 2014 • Last updated June 9, 2014.