Is Advocacy Really What You Think?

When I say the word advocacy, what picture comes to mind? Do you envision standing before a committee in Congress testifying? Do you imagine you have to have a perfect presentation with slides in front of hundreds of people? Maybe you envision it as a person who talks to everyone they meet about their disease - and you are an introvert! While all of these could be a way to advocate, they are not the only ways. In fact, the most influential advocates are simply patients doing small acts.

Why do I advocate?

Before I jump into how to advocate, maybe I should explain why I advocate at all.

Why do I tell my migraine and cluster headache stories?

I do not tell my story because I want people to feel sorry for me, or because my story is special in some way. I tell my story for two primary reasons. First, it is empowering to tell my story! Instead of hiding in shame, I am acknowledging what I struggle with. It gives me a purpose. I can give a voice to issues that not only matter to me, but to others. In doing so, I tell my story.

How do I connect with others?

Secondly, I connect with others. Every time I tell my story I hear a "me too". I find someone who has never met someone else who experiences what we experience. They often have tears in their eyes, they feel seen for the first time. We can then have a conversation without having to explain ourselves, but we know we get each other. These connections are so important. The more rare and complex your conditions, the more special these bonds can be. I can absolutely connect with someone who has cluster headache, but that moment when I meet someone who experiences migraine, cluster headache, trigeminal neuralgia, and SUNCT - that is a unicorn moment. The world feels smaller and I feel less alone (and less crazy).

What are the small ways I advocate?

When you go to your doctor's appointment you have an opportunity to talk with medical staff and even your doctor. My neurologist blew off my vestibular symptoms so I went to my headache specialist who immediately advocated for me to get into vestibular rehab. This made a huge difference for me. I made sure to explain to my neurologist what a difference this made in my symptoms. This will help him next time a patient talks about vestibular symptoms. Just like every human, we remember stories - so telling your story makes a huge difference.

Have you considered wearing a t-shirt that brings awareness? I have so many t-shirts for migraine awareness and cluster headache awareness from doing virtual 5k events. There are also in-person events (and conferences). I wear them to my doctor’s offices (including places like my ophthalmologist who treats my chronic dry eye, to the blood drive and even to my primary care physician). Every interaction with a medical professional whether they are a specialist, a nurse practitioner or a nurse at a blood drive makes a huge impact because chances are they will encounter others with headache diseases in their everyday occupation.

How can I make a bigger difference?

Advocating with an organization or coalition can be a great option. When you add your voice to a larger group it gets more reach. Within the headache disease space, there are several organizations who ask for those who are interested in joining into a larger event. The primary one that comes to mind is Headache on the Hill.

Can my advocacy go beyond the headache space?

Another option that I have been experimenting with is not staying focused just on headache disease space, but joining more broad groups that work on policy changes not only federally but also at the state level and not only a focus on headache disease but maybe chronic disease in general. We share many of the same pain points!

Oftentimes, organizations make this super easy for you to participate. They understand how to simplify and will often write sample emails and all you have to do is input your address and the software will locate your representatives and send the email. If you are up to it, you can personalize your email, however, the bulk of the “ask” is done for you. If your advocacy is a meeting (virtual or in person), the main point of this type of advocacy is sharing your elevator pitch alongside others. An elevator pitch can be a 30 second to 2 minute version of your story meant to highlight a concise point. Policymakers need to hear these stories so they understand the importance of issues.

How can you advocate?

Just remember, every conversation matters. Every story you hear and tell really does make a difference. You've planted a seed! Or, maybe you are watering a seed someone else has planted. You may not get to see what happens to the flower when it blooms, but remember it takes many small steps before a flower blooms. Another warrior might be heard because you told someone your story.

Who do you tell your story to? Have you joined advocacy efforts?