Why Am I A Patient Advocate?

2:31 PM chronicmigraineellie 2 Comments

As I'm preparing for my second Headache on the Hill, I've been reflecting on how I got to the place where I am. Being a patient advocate is something that I never saw myself doing, especially when my health was at its worst. At the end of the day, being a patient advocate is about sharing your story. The more that I told my story to people in my life, and then to people that I met, the more I realized that my story and my experiences impact other people and how they think about migraine and chronic illness.

Most people know someone who has some type of chronic illness. In 2012, about half of all adults in the US, around 117 million people had one or more chronic health conditions, with one in four adults having two or more chronic health conditions, according to the CDC. Chronic illnesses affect everyone in some way, but our society still struggles to talk frankly about the realities of living and managing a chronic illness.

I've become pretty comfortable talking about my experiences and my illness, but it didn't start off that way. Starting this blog was extremely nervewracking, and in some ways, it was easier to sit behind a computer and write to a faceless, nameless crowd than it was to talk to someone in person. Whenever I would talk with anyone in person, I would start worrying about how they saw me. Would they judge me? Do they understand? Are they uncomfortable? Can they see that I'm in pain right now? I was so worried about what other people thought of me and my story that I forgot what actually mattered. By sharing my story, I am owning my story. It's not pretty. It's filled with fear, medical problems, and discomfort. But it's my story. It's my life, and no one else's, and to a certain extent, there is nothing that I can do to change that. Living with a chronic illness is not easy by any means, but by sharing my story, I am helping others find the strength to tell theirs.

There will always be someone who doesn't understand, who judges you, or who makes nasty comments. But I've found that when I tell my story, more often than not, the reaction is positive, even curious sometimes. I've become friends with people because we've bonded over our migraines and chronic illnesses. I've talked with family friends about their loved ones, with Uber drivers, with anyone who wants to talk with me about healthcare or their own medical stories. I've been surprised by how open that people are when you show a bit of your heart on your sleeve. Never, in a million years, did I expect to be sharing my experiences on the internet and being a part of #HOH2018 and lobbying for migraine and headache disorders. It all started with me, writing a post about my migraines on a blog that only my parents and a couple friends read. The main point is that advocacy doesn't have to be about writing articles or taking monumental efforts to do something big. Just talking with people, and taking the time to explain your story and listen to their questions and their own experiences can make a significant impact. I can't tell you how many times my friends and family have had conversations with other people and tell me that they were able to empathize and understand someone else's story (whether it was with migraine or some other chronic illness) because of the conversations that we had about my story. and experiences

I'm a patient advocate because I love helping people understand and learn about migraine and chronic illnesses. You can also be a patient advocate as well. It all starts with you sharing your story.

As always, have an amazing migraine-free week!

2 comments:

  1. Its refreshing to read about people who have been through the same things
    I spend 25 years in serious pain with Migraines and its only now I can start to enjoy life.
    Enjoyed reading the post

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