By Barby Ingle, PNN Columnist 

So many in the chronic pain community wonder how to share their stories with the news media and connect with reporters. I have been doing that for years as a patient advocate, creating newsworthy content that helps educate the public about the issues we face.

The media are a powerful tool for advocacy because they can help you reach a larger audience and get your message out there. Networking with different media outlets has allowed me to spread my advocacy message further and make a real impact. I have built relationships with the media and gained access to publications I never had before. 

For example, I researched all of the major news outlets in Arizona, where I live, and learned who the producers, publishers and health writers are. I then connected and introduced myself to each of them.

Whenever I have a significant news item in the chronic pain or rare disease community that affects Arizonans, I reach out. Even when I do not have a specific story to pitch, I stay in touch. That helps to keep me in their minds. When they have a new story or need to verify something, they contact me for comment and to confirm the information. 

Media outlets can help you reach your target audience and spread the word about patient issues, products, services and disease-specific information. The more information we share effectively, the better access we’ll have to treatment. Media can be a friend or foe. We must learn to use them to get others involved.

We must also be mindful of our message and portrayal in the media, ensuring the information we provide is accurate and that the story is told to benefit our cause. We should also be prepared for any potential negative backlash from media campaigns. Choosing bipartisan, non-political topics, such as promoting individualized care and understanding how our medical system works can avoid this. 

We must also remain vigilant and aware of misinformation and bias in the media. It is essential to consider the impact of our message and how different communities may perceive it. 

Sharing Your Message

How can you share your message through the media to make a difference? Focus on issues that resonate with their audience and yours. Be bold in your advocacy approach. Feel free to challenge the status quo and use the media to highlight critical issues.

You can use a variety of mediums to reach your target audience. Be open to sharing on television, radio, newspapers, magazines, online, and in support groups. 

Communicate your message creatively to build interest in topics. You will need to offer something “new” to the media and be prepared to discuss your subject from multiple points of view, so that it connects with more people. Monitor the response to your message and adjust accordingly. Follow up and ensure the right message is heard.

Different people have different interests and perspectives. It's essential to tailor your message to specific groups of people so that they can understand and appreciate what you have to say. 

A 60-second message I could leave for a local news reporter might go something like this:

“Hello. I am Barby Ingle, a health advocate and chronic disease patient with multiple rare diseases. I live in Gold Canyon, AZ, and am excited to be working with my state senator on health bill SB1234.

I live with a rare pain condition called Reflex Sympathetic Dystrophy. It has affected every aspect of my life: financial, social, family and access to care. 2.9 million Arizonans live with a condition that involves pain; here in our district, approximately 150,000 are affected.

SB1234 is designed to help patients like me get better access to proper and timely care. I would love to set up a time to speak with you in detail or I can come in for an interview or live segment. I will email you a copy of the bill and supporting details. Please be on the watch for it in the next few minutes.

Feel free to call me back or email me to schedule a meeting. I look forward to hearing from you or one of your staff members soon. Thanks!” 

You should know the audience or readership of the media outlet you work with. That will help you understand what approach to take with your messaging and takeaways for that audience. It will make your pitch stronger, and give readers and viewers an opportunity to act on it. Be creative in your approach and use various media platforms. 

Additionally, by monitoring the response, you can identify which messages are resonating and which may need further adjustments. Following up with your audience shows that you care and are invested in the conversation.

Making or sharing a video, podcast or online post to explain your topic further is also possible. Don't just do the media as a one-and-done -- share it on social media to reach a wider audience.

To conclude, we must be willing to engage with the news media and the public to ensure our message is heard. The media can give the pain community the attention needed to spread a message of need.

Be it a lack of individualized care, a decision that negatively affects the pain community, or a desire for an amended state/federal law, our voices can be used to make change and make a difference in the lives of the patients. Ultimately, we are responsible for accurately communicating our message to the press and the public. 

Barby Ingle is a reality TV personality living with multiple rare and chronic diseases. She is a chronic pain educator, patient advocate, motivational speaker, and best-selling author on pain topics. You can follow Barby at www.barbyingle.com.