Chronic Pain Comes To Twitter

Chronic Pain Comes To Twitter

Britt Johnson

Britt Johnson The Hurt Blogger

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

Authored by: Ed Coghlan

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paita

My god,,my heartreaks every time I read posts like yours,,,Hun,,at this very moment,,there is nothing I can do,,Now by law,,they are suppose to give u a 30 day supply,,until u find another doctor,,Look up your hospitals ,”bill of rights,”,,see if pain management is in there,,or ,”continueity of care,”’,,,,which means they have to provide u w/a continual form of your treatment to someone before he discharges u from his care,,,now by law,,again,,they are suppose to give u a 30 day supply,,some have been able to push that ,or until they get into another doctor,which takes 3 month sometimes,,,but get on that phone now,,and find out the ,”bill of rights,” for your hospital,and tell them by law,,u get a 30 day supply,,before the office closes,,hmm,,good luck w/them picking up the phone though,,this is sooooooo inhumane,,,I mean we are getting together to file a formal complaint w/the U.N,,,but that will take time,,and time is not on your side right now,,,make those phone calls before they close,,,good luck hun ,,,,,paita

ken

hello, I need to tell this to somebody? I am 54 years old & was in a major auto accident in 87 crushed femur, shattered left wrist, left artifical hip. Been on pain meds since the 90s. doctors are saying this as of today in mich. oh, if you are on narco. we cannot help you! the hospital, oh if you are on pain meds we cannot help you! what am I supposed to do?? been without for 24 hours, not a abuser, felon, never been in jail. so if you are handicapped and your doctor, has released me because I was made a appointment by the doctor, that I was unaware of. as my house was getting handicapped assesable. is this discrimanation or what? thankyou. any help would be appreiciated!!!

paita

Well lets hope Twitter does a better job then the A.C.L.U. of Wisconsin at helping chronic physical pain suffer’s,,,protect there god given right of not forced endured torture,,and maybe all these Dr.s will learn ,true physical pain is NOT in our heads,,,,As a chronic physical pain suffer,,,I have accepted that the permanent scaring has cause permanent nerve damage,,I will have my chronic physical pain forever,no,,it cannot be cured,,Just like a diabetic who will need insulin for life,,chronic pain suffers will need medicine for life,,,now we have accepted that,,y can’t Doctors,,or the D.E.A.???,,,Hopefully this Twitter,,acct,,,will bring more of us together,,which is really needed,,if we want to kill the D.E.A’s attack on legitimate chronic pain suffers,and the Doctors who treat us,,,Hey the D.E.A..are killing us,,,its time to kill the D.E.A’s uneducated assault on us,,,Mr..Ed is right,,,we need more non bias research on us,,,,,For now,,if my Dr..doesn’t get aced by the D.E.A.,,,my treatment plan has worked,,,for 10 years now,,so pain management can work,,if the proper ideation and ,medicines are used ,and its accepted that this treatment and medicine is needed for life,,,Us chronic pain people are all adults,,we aren’t stupid,,,we know,,the side effects of our medicines,,,but if that medicine improves my quality of life for 25 years,,,and shorten my life span by 5 years soo be it,,,I am an adult,,its my body,,,my life,,my decision,,paita