Should we break the internet to talk about #Fibromyalgia ?

When I first started doing research about fibromyalgia I found myself engaged in a disturbing infinite loop. How can I be so disappointed that so few people (including health professionals) know about this condition when I, myself, only knew it existed the day I have been given an exclusion diagnosis. Though you do imagine my surprise when I first googled fibromyalgia… Not only it is real but millions of people suffer from it. At least those who know they have it !

So how come so many people, and until a year ago, I, have never heard about it ? putting aside the complex aspects of this condition and the difficulty to diagnose it, I thought about another question: Who talks about fibromyalgia? Mostly people who HAVE to deal with it directly or indirectly but is it enough to raise awareness about a chronic illness no one heard about.

Internet and social medias made it easier for ordinary people like you and me to do incredible things and speak up their minds and even though there is an important increase in the number of blogs, e-communities and support groups addressing the matter, most people still don’t know about it. In other words, not enough people talk about it and meanwhile, we’re still waiting for a cure.

Coming back to the question « who talks about fibromyalgia ?  » I made a list of the few times (I could spot) when Fibromyalgia has been mentioned by a celebrity or public figure these last years. Because let’s face it, who do most people want to listen to ? well, celebrities and very important people. Here is what I’ve found :

• Morgan freeman and Dr Oz, were all over Pinterest boards related to fibromyalgia. The first sharing his experience with fibromyalgia for the first time (In fact I found an interesting article titled Why I Hope Morgan Freeman Becomes a Fibromyalgia Spokesman), While Dr Oz did a special : The Disease Your Doctor May Miss: Fibromyalgia. giving people more insight about this « invisible illness » and the difficulty to diagnose it.
• Lately, Selena Gomez revealed that she had been struggling with Lupus which is a serious chronic illness, and even though it is not fibromyalgia, we have this thing going for us which is good.
• 2 Broke girls, a comic tv show depicting the life struggles of two broke girls coming from different backgrounds using sarcasm and dark humor (I must admit that I love it). In one of their episodes, a leading character refers to a dog named Lady Marmelade that has both fibromyalgia and seasonal depression as « the Dog lottery ». Told you, dark humour and sarcasm and in a way, I can’t seem to disagree.

  

So at this point I have to ask : should we wait for a celebrity to talk about this condition so we can raise awareness about it or is it that fibromyalgia is not glamorous enough to make it to the headlines ?

There must be someone influential who has fibromyalgia or someone close to them who suffers from it !

I even considered growing a butt and posing naked to try to break the internet, Kardashian style, to try to get attention but then I am not sure that it would have the same impact coming from me. Also I must admit that I could never be able to forgive myself for doing it, not even for the cause – sorry ! So instead, I created a twitter account, Turtle Style and called it a day.

It is not easy to talk about fibromyalgia nor it is to explain it. How can you explain that some days you can do certain things and the day after you can’t anymore ? How can you talk about an illness that many doctors and medical instances refuse to see as it is, an illness ? More importantly, how can you explain something that you strive everyday to understand – that might be an understatement- without ever feeling closer to the point ?

Famous or not, fibromyalgia still holds too much mystery for an illness that has been around for a while. Most people didn’t want to see it back then and unfortunately, it is still the case in 2017. An invisible illness is never quite simple to explain since there is nothing to see and therefore nothing to believe. There are only words, feelings and irritated faces.

The stronger are the words, the stronger is the speech or maybe : the stronger is the speaker, the stronger is the speech !

So until Chewbacca suffers from fibromyalgia in the next Stars Wars (though I wouldn’t wish it for anyone, not even fictional characters) there is one thing I know for now: the real fight against this illness will only start, the day people will start seeing at as a « real » condition and not something millions of people can make up. Until then, Fibro warriors are certainly going to keep up the good work by spreading awareness every way they can and showing support from every side of the world. Everyday, I feel grateful for having people to reach out to when in need. However, that doesn’t change the fact that we need more people telling us that at some point, everything is going to be okay, even if we have fibromyalgia.

K.