Responsible Blogging About Fibromyalgia

(Note: This is an edited, more concise version of a previous post.)

Recently I read a comment on a fibromyalgia blog where the person was lambasting the blogger for her whining.  Normally, I’d react like the blogger did: “You have no clue what it’s like to live this hell.”  But this time I found myself siding with the commenter.

That really bothered me, and I was trying to figure out why.  Eventually I figured it out, and decided it was important to share with others.  It will probably ruffle many fibro bloggers feathers, thus I feel I am taking a risk putting it out here.  But I think it needs to be said.

When you blog – as opposed to private journalling or discussion board/forum posting – there is no control over the audience.  It’s one thing to bitch and moan on a fibro support forum.  We understand.  But when you blog in an open, public space, you represent all of us.  Yes, that’s what I said.  Whether you intend to or not, you are – at that moment – the “face of fibro” for the reader.  So when you whine about something that the uninformed sees as trivial, you perpetuate the stereotype that fibro is just a bunch of weak, oversensitive cry babies.  No, it’s not fair or right.  But it happens.  (See my other post “Why People Don’t Sympathize with Chronic Pain”.)

I realized it wasn’t just the “bitching and moaning” that bugged me so much about fibro bloggers complaining.  It was the fact that they are doing it in what I deemed to be an inappropriate way – just blurting out a stream of whining consciousness – in an inappropriate, i.e. unsafe, place.  It’s fear – fear of not being taken seriously.  A fear many with “invisible illnesses” struggle with. The “But you don’t LOOK sick” dismissal. Like when female executives avoid talking to their male colleagues about the real challenges they face balancing work and family responsibilities – because it could be used as ammunition to prove women can’t make it in a competitive corporate environment.

There is nothing wrong with blogging about the challenges of living with fibromyalgia.  But just saying, “This sucks!” is irresponsible given the uphill battle we face to be taken seriously – not only in the general public but also in the medical and research communities.

While freedom of expression should be sacred, so should responsibility.  Therefore, I appeal to all fibro bloggers to really THINK about WHY you are writing what you are writing on your blog.

  • If you are writing for yourself, why have a public blog? Don’t use your public blog as a personal journal, especially purely emotional, cathartic writing where you are really just talking to yourself, trying to work through an emotion.  Is this really for  public consumption?
  • If you are writing to help others, ask whether what you are posting is serving that noble purpose.  Does bitching about how hard a time you had at the grocery store that morning really help someone?  It’s one thing to describe the experience in a way someone could spend some time “in your shoes” so to speak.  But saying only that, “It was awful!” limits the sharing to the emotional venting part of the experience. Sure, there’s the “I’m glad I’m not alone” effect, but that’s what support groups are for.
  • Speaking of support groups, unless your blog is a “members only” site, take a moment and think about what you are really doing by having lengthy conversations via “Comments”:  You’re basically letting the world have a front row seat to a private conversation.  Ask yourself this:  Would you have the same discussion face to face in a shopping mall with microphones broadcasting the whole thing throughout the mall?  If you want to connect and talk with others who understand what you’re going through, do it in a private support forum, not a public blog!

It is critical that people be educated about the reality of this disease.  Blogs are a great way to do that.  But given the challenges that we face, fibro bloggers more than other bloggers need to periodically take a step back and evaluate the message their blog is sending out to the world.  Are you providing truly helpful real-life insight into living with fibro?  Or are you just saying, “This sucks!”?

 

Advertisements