When you talk with chronic pain sufferers, often discussion will turn to community. Their feeling is no one understands me better than a fellow pain sufferer.
A Southern California woman took that discussion one step further—to Twitter.
And to use the parlance of Twitter, it appears to have blown up!
Britt Johnson writes a blog well known in chronic pain circles, called The Hurt Blogger. It is described as easing the pain of arthritis through humor, sarcasm and community. It’s usually a good, honest read.
But she described her feelings in late January of this year and felt like maybe she was filtering more than being honest. She decided to remove the filter.
So she took to Twitter for two days early in February and using the hashtag #chroniclife she began to tweet about her life.
Britt set some ground rules:
She promised to:
- Tweet every time I feel pain
- Share the mental health aspects of my disease.
- Share all the medications I take and devices I use
She promised not to:
- Actively respond to all replies, unless they offer a chance at clarification, or improving the education of the experiment.
- Filter myself
- Embellish how I’m feeling
What happened next was that people connected with her, encouraged her and started sharing their own journey—and it continues today.
So why did Britt do this?
“I grew tired of feeling like I was still wearing a mask, of still feeling ashamed to share the true depth of what I deal with on a daily basis, of my honesty feeling like a complaint,” she told the National Pain Report. “I wanted to help people understand that we don’t simply take a handful of pills, and sometimes feel some pain. Chronic diseases are every moment, of every day. Every decision we make affects and is affected by our diseases.”
Stanford University pain psychologist and author Dr. Beth Darnall has followed Britt’s journey into social media. She likes what she sees.
“Britt is using social media to share her story and allow others to feel connected and less isolated—this is a tremendous benefit to the pain community,” said Dr. Darnall.
The author of the 2014 book, Less Pain, Fewer Pills thinks bloggers and social media have an important role to play in the chronic pain discussion.
“Bloggers have the opportunity to provide stories and information that are positive, instill hope, and are informative,” she added.
Thinking of Twitter and social media as group support is how the pain psychologist looks at it as people connect online to provide comfort, educate each other have real conversations. But Darnell warns that there is a downside to any group dynamic including social media: negativity.
“Beware of sites or conversation threads that maintain a negative focus on a topic. Group support works best when the collective focuses on moving forward in a proactive way,” she said.
When you take a look at the #chroniclife community on Twitter you don’t see negativity; rather it appears that honesty and positivity are two main themes.
And to no one’s surprise, Britt sees this conversation she started in the present tense and destined to continue.
“My hope is that the tweets from the experiment and the hashtag itself will make its way into medical education,” she told us. “If you want to understand the constancy of disease, and attempt to briefly step into a patient’s shows and understand the enormity and weight of a disease, follow the hashtag.”
(Some of our National Pain Report and my personal tweets include and will continue to include the #chroniclife hashtag to support this effort. We suggest you do the same.)
While we are talking about Twitter, let’s put a plug in for the people in this article.
Follow Britt Johnson on Twitter @HurtBlogger
Follow the National Pain Report on Twitter @NatPainReport
Follow Dr. Beth Darnall on Twitter @BethDarnall
Follow Ed Coghlan on Twitter @Edcoghlan