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!”?



The Most Important Video On Fibromyalgia Ever

This presentation from a 2010 symposium on fibromyalgia is the best overview I’ve ever come across.

  • Scientific research studies that proves it’s real – with pictures!
  • The beginnings of a scientific understanding of what is happening in our bodies – our brains ARE different
  • A recognition of the complexity and variation in fibromyalgia symptoms – we’re not “one size fits all”

Dr. Wood does an outstanding job of presenting technical information in a way that is easy to understand.

The lecture is split into three videos on YouTube, about 13 minutes each:

Fibromyalgia: New Insights, New Hope – Part 1

Fibromyalgia: New Insights, New Hope – Part 2

Fibromyalgia: New Insights, New Hope – Part 3

Every one with fibromyalgia and their families and friends – and doctors! – must see this!


Source Credit: OFFER Utah: Organization for Fatigue & Fibromyalgia Education & Research


Why People Don’t Sympathize with Chronic Pain

I have been suffering and surviving with fibromyalgia for over 10 years now.  I still feel guilty that I’m not working.  My sister still doesn’t think I’m sick.  Most of my acquaintances have no clue how much pain I’m in.

Why is chronic pain is so hard for people to understand?

One obvious reason is that it is not usually visible.  If I turned green from head to toe, people would surely be taken aback.  But not only do I look “normal” on the outside, I make an effort to put on a “happy face” for those rare and few hours I actually leave my house.  What am I going to do, start screaming like a Banshee up and down the grocery isle?  Yell at every store clerk I meet?  Walk into someone’s house with the greeting, “I’m miserable!”

Of course not.  Sure I might have my cane with me and be grimacing a bit.  But I’m going to act like a civilized human being.  And what people don’t think about is that I only leave the house when I feel well enough to.  The few hours that the pain pills actually work.  The rare day that my symptoms take a holiday.  It happens.  But although those times are NOT MY NORM, they are usually the only times other people see me.

But even when I tell people how much I’m hurting, it doesn’t seem to register.  They often respond with, “Yeah, I think I overdid it the other day too.”  Huh?

Eventually I had the most startling revelation.  I think one reason it’s hard for healthy people to understand chronic pain is that they can’t even wrap their heads around the idea of being in pain ALL the time, day after day, week after week, let alone month after month, year after year.  The good thing is that everyone knows what pain feels like.  The bad thing is that everyone knows what pain feels like.  Imagine someone telling you the following:

“For the next ten years, you will experience 29,400* hours of pain.  Each year, you can expect 305 days of pain.”

You plan on sticking around for that? Any sane person would decide to call it quits are what? 100 hours? 1000 hours?

*That’s a conservative estimate using the following formula:  Just half day of pain: 12 hours X 365 = 4,380 hours per year, then subtracting 60 full days per year (accounting for one full day a week that might be low pain) = 4,380-1,440 = 2,940 x 10 = 29,400.

And yet, every day I beat myself up for not doing more.  For the things on my to do list yet to be done.  For not being able to “work around/overcome my disability”.  Despite enduring the unthinkable, I’m ashamed at having applied for Social Security Disability Benefits.  Three hundred days of pain each year and I don’t think I deserve disability benefits?!?  What a shocking example of the insidiousness of brain programming – how messages seep in and set up camp, defending their territory even in the face of facts!

No wonder I hate those “hero” stories, not to mention those who proclaim they’ve recovered from fibromyalgia.  Yeah, that’s all I need – more shame.  More people thinking I should be able to “figure something out”.  How well can you think with your hand on a hot burner?!?

Alright, I’ve worked myself into a tizzy, about to start saying, “Bite Me!” so I better reel it in and finish.

I hope this has given you a new way to think about chronic pain.  I hope those of you who are healthy take some time to let this sink in.  The next time you “overdo it” or pull a muscle, think about that pain never going away. That that’s how you’ll feel for the rest of your life.  And for those of you coping with chronic pain, I hope this will help you be more gentle and compassionate with yourselves.