Social Media

Social media is a broad term used to describe Internet-based communication that allows users to publish information, thoughts, and ideas on the Internet with the intention of engaging other users in conversation. Companies, politicians, and your neighbors are using social media to connect in the online world to form relationships for personal and business purposes.

Social media is distinct from the traditional types of media, such as newspaper, television and radio, in that anyone can publish material. Social media has the ability to reach a very targeted audience (e.g., “hyper-local”) who are interested in the topic being discussed, and information can be posted or modified immediately. Because of the nature of social media, keep in mind that, unlike traditional media outlets, editors are usually not overseeing accuracy or content. Blogs are a common form of social media, where you can read, write, or edit a shared online journal. Several people with pain have found blogging about their experience to be a powerful outlet, and their readers have found inspiration, hope and current information. You can also share your blog link with media. When developing stories, reporters read information from all sources, including blogs. Why not serve as a source?

Consider reaching out to writers (bloggers) in the social media space with your pain advocacy efforts and joining online discussions. Favorite bloggers can be followed through sites like Tumblr.
Lastly, keep in mind boundaries and professionalism when engaging in social media. If you are associated with a professional or consumer advocacy organization, check to see if they have developed social media guidelines or rules of engagement.

Privacy Settings. Be sure to check, set and understand what these mean for ALL of the social media tools that you use.

Facebook:

Facebook has taken the Social Media world by storm. With approximately 1.4 billion active users, it can be a great place to share your story with many people. A wide majority of organizations and businesses use Facebook as a way to connect with their audience and promote their services. Here are some great ways you can share your story on Facebook:

Write a compelling status sharing the key message of your story. Strive to keep it brief, or it may get overlooked.
Share a photo that captures the message you want to share. Include a brief caption to bring the photo full circle.
Post a video on Facebook of yourself sharing your story. Once again, briefness is key. Aim to keep the video under 5 minutes.

The Humans of New York Facebook page is a great example to look at for ideas on how you can share your story, and keep it compelling.

Also check out the NFMCPA Facebook page.

Instagram:

Instagram is begining to take off in the advocacy world. Several brands and organizations are forming Instagram accounts to help personify what they do. A great example of an organization on Instagram is the American Cancer Society. Sharing a photo on your Instagram account that captures your message, along with a compelling caption, is a great way to share your story. You can also post a 15-second video clip in an effort to spread your message.

Twitter:

Twitter is one of the largest used social networks. Users post updates (tweets) throughout the day that are limited to 140 characters. Tweets can link to different websites, include photos, or even videos. A great example of a successful advocate on Twitter is Senator Cory Booker of New Jersey. Keep your tweets personal, and to the point, to capture the attention of others. Use of hashtags (#) is also helpful. Hashtags are Twitter's way of categorizing subject content of tweets. You can reach people who are interested in fibromyalgia or chronic pain by including terms such as #fibromyalgia or #chronic pain in your tweet. See the NFMCPA's twitter account for examples. Consider seeking out or including hashtags as you become more engaged with Twitter.

Instagram and Facebook also implement the use of hashtags.

YouTube:

One of the best ways to share your story is through video. Keeping your video under 10 minutes will help promote more viewers. A great example of a shared story through Youtube is by Brook Shaden of Promoting Passion. Click here to view her story on fibromyalgia awareness. Your YouTube video can be shared on each of the aforementioned social media sites to help further the reach.

Blog:

Blogging is a great way to share your story. Some common blogging platforms are Blogger and Wordpress. These plattforms give you the chance to tell your story without having to be overly brief. Many bloggers like to break up their stories into several different parts. This strategy helps encourage more readers. A great example of a fibromyalgia blogger is Leader Against Pain Melissa Swanson. Click here to view her blog, "Fibro Warriors ~ Living Life."

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Harness the Power of Your Story

Your work is important. Your dreams count. Your voice matters, and what matters to you should also matter to Congress. In order for legislators to really understand how chronic pain affects their communities, they need to hear from people that are experiencing it first hand. It's always wise to gear your story towards demonstrating how government action/inaction/policy/etc. has directly impacted your life.

But what makes a good story and how do you use it? Click here to download 5 tips to help get you started with your story.

Story Examples

LoriLane's story
Donna's Story

Ways You Can Share Your Story

There are many different ways that your story can be shared. For the purpose of this website, we have decided to focus on how to share your story through social media. We have also provided some resources in the areas of working with your local legislators, and sharing your story with the local press.

Your Voice Matters

We want to hear your story. Share it with us here.

Social Media

Facebook: Facebook has taken the Social Media world by storm. With approximately 1.55 billion active users, it can be a great place to share your story with many people. A wide majority of organizations and businesses use Facebook as a way to connect with their audience and promote their services. Here are some great ways you can share your story on Facebook:

Write a compelling status sharing the key message of your story. Strive to keep it brief, or it may get overlooked.
Share a photo that captures the message you want to share. Include a brief caption to bring the photo full circle.
Post a video on Facebook of yourself sharing your story. Once again, briefness is key. Aim to keep the video under 5 minutes.

The NFMCPA's Invisible People Exist Facebook page is a great resource for story ideas and formats. If you'd like to share yours with us, please tag us and use the hashtag #visiblenow.

The Humans of New York Facebook page is a great example to look at for ideas on how you can share your story, and keep it compelling.

Local Legislators

To learn more about sharing with your local legislators, view the section titled "How to Advocate with your Local Legislators"

Local Press/Media

The Community Tool Box offers many resources to help guide a person towards advocacy effort. To learn more about how you can work with your local media, click here.

How to Advocate with your Local Legislators

In many cases, advocates of a cause meet with their state's senator or legislator to help promote change. Before one can meet with their elected officials, they should take a little time to learn about their interests to help frame the message in a way that will help get their full attention. Senators and Representatives on the Health Policy committees can have a significant impact on issues facing the fibromyalgia/chronic pain community. The best way to become an effective advocate is to build strong relationships with the people who represent you in your community, and in Washington, DC (and their staff). You want them to recognize your name and to trust the messages that you deliver.

Additional Resources:

Additional Tips

Write letters-to-the-editor about issues. Members of Congress always read the letters in their hometown newspapers. Editors like letters that respond to something that appeared recently in the paper. Keep your letter concise, approximately 150 words. Most newspapers prefer email submissions. Include your full name, address, phone number, and email.
Go to town hall meetings that your members of Congress hold and ask questions about chronic pain issues. Tell about the potential impact locally of proposed legislation (positive or negative), or tell about the ways that funding shortfalls have hurt the local service deliverers.
Build relationships with Congressional staff who work in the state or local offices (District Offices). They represent the member of Congress at local meetings and events, and serve as caseworkers to help constituents with federal programs and benefits. Let them know how you can help them serve the community. Then when the Senator or Representative needs to know how legislation might affect constiutents, local staff will know who to turn to for input.
Share information and ideas with others in your community who care about chronic pain issues. Share the guidelines on this sheet.

Remember, you are building a relationship that may last for years, and that puts you in a valued position where a member of Congress trusts you and may seek out your help or opinion. Keep the lines of communication open and well-used.