Defining Your Story As a Patient Advocate

Defining Your Story As a Patient AdvocateBy Barby Ingle, PNN Columnist – Jan 2019

When honing your message, start with deciding what you want to talk about.

Sometimes it is important to go wide and broad when talking about chronic pain, but other times it’s important to discuss your most pressing experiences with a specific disease or challenge.

Defining the issue that’s important to you is key.

You must be able to explain your point of view and back it up with data and science that is relevant and recent.

Even though this is important, the anti-opioid zealots never present data or proof for their viewpoints, yet they are being listened to much more than pain patients.

Keep it simple. Think of 2 or 3 takeaways for your audience.

Remember, you are not sharing your message to prove someone else is wrong or to undermine them. You are there to share your story and the challenges that affect your daily living

If I talk about someone else’s message, it takes away from my own. Tell them who you are, how you are affected by a policy, and what can be done to solve it.  

Your personal story should be about you and what you have gone through.

Let the audience know why you care.

There should always be “an ask.”  What do you want your audience to do for you?  A state legislator may be voting on a specific bill that you want them to support or vote against. Or tell your audience how they can help spread awareness and advocacy.

Next, give them the takeaways

Keeping the requested action positive is important and keeps it moving in society

You can ask for just about anything, but be as specific as possible. If you are asking for others to make a change or believe in something you advocate, then you must show some expertise on the topic.

Understand that some words are trigger words that should be avoided.

Instead of talking about how hard it is to get “opioids” or “narcotics,” say patients need better access to “pain medication.” They are all descriptors of the same thing, but have very different meanings and connotations.

It takes a lot of courage to share health topics and challenges we’ve been through. Many advocates, including myself, are ridiculed and shamed. PNN had a great column on this last month, “Stop Shaming Pain by Mia Maysack. As Mia explained, you may encounter negativity even within our own pain community.

Your story should take others on the journey you’ve been on.

Think about how you want your audience to feel and what your end goal for them will be. Being yourself, being vulnerable, and sharing your story are powerful ways to engage the public and create change.

Other thoughts?

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