In the past few months, I’ve had so many wonderful opportunities to be part of events or have discussions about the trials and tribulations of those who have migraine or cluster disease. The word patient advocate kept coming up and I’ve been asked how I became a voice in our community.
When I became chronic, I didn’t start out thinking that a big part of the energy that I do have would be in patient advocacy. I just needed a purpose and I found it in writing. That opened up some doors for me to become even more engaged. I think I’ve also been in the right place at the right time. When I lived in DC, several events and conferences were held there, so it was easier for me to attend. Now I look forward to those events each year and try to travel to attend.
Flying to a conference to listen to days of medical presentations or meeting with members of Congress to address the need for migraine funding are not the only ways in which someone can be a patient advocate. An advocate is someone who publicly supports or recommends a particular cause. Synonyms for advocate include promoter, champion, campaigner, fighter and I would like to add warrior.
I recently discussed what it meant to be a patient advocate with other writers at Migraine.com. We all felt that there are so many ways a person can be considered a patient advocate. I bet that you are already a patient advocate and don’t know it.
Here are ways you can further the cause of raising migraine awareness:
- Tell your story. It matters. Typically, someone will see themselves in your story and it will help them to feel less alone. You can submit your story to Migraine.com here, where it will likely get published in the Community section under Stories.
- Educate others. Take the opportunity to talk to your friends, family or even a stranger when they ask about your migraine disease. Another way to educate others can be as simple as sharing Facebook or Twitter posts about migraine stats or sharing stories or articles you come across. If you can hit the share or retweet button, you are an advocate.
- Speaking of Facebook, there are many migraine advocacy groups and support groups out there. Supporting others, following campaigns or starting a group is a great way to start making connections.
- Become a member of the American Headache and Migraine Association (AHMA), which holds an in-person patient conference once a year. The Clusterbusters organization also holds a multi-day patient conference.
- Attend Headache on the Hill, an annual advocacy event where attendees meet with their members of Congress to discuss awareness and need for funding. If you can’t physically attend, get involved by writing or calling your representatives.
- Like pages that sponsor fundraising and advocacy events. Check out Miles for Migraine, Runnin’ for Research, Alliance for Headache Disorders Advocacy (AHDA), Association of Migraine Disorders (AMD), National Headache Foundation, American Migraine Foundation who just started the Move Against Migraine campaign and has weekly FB Live events. The US Pain Foundation also offers monthly conference call support groups that cover a variety of chronic pain diseases.
- June is Migraine Awareness Month. Be active on social media. There will be many opportunities for you to get involved from the comfort of your own home.
- Even if you physically can’t be there for an event, just telling others about it helps spread the word.
- You may not have thought about this one, but If you’ve ever helped a family member or friend at the hospital or doctor’s office, you were there as an advocate on their behalf.
I think that being a patient advocate boils down to providing education, supporting patients or communicating with local and US legislators about the issues that affect the diseases that are important to you. You get to decide the ways in which you want to contribute. Give yourself some credit for the things you’ve already been doing that help the migraine community! Do you have any other suggestions or thoughts on what being an advocate means?