Once upon a time I learned a valuable lesson about the things you post on Facebook. I learned that the things you say on Facebook are fair game for publication. Nobody has to ask your permission, or even notify you for that matter. It’s a thing in the user agreement you never read. So beware! And as always, think before you post! Or you too could end up published in the latest edition of Arthritis Today Magazine….
I follow the Arthritis Foundation Facebook page because I have arthritis and I participate in a lot of Arthritis Foundation events. It’s a fantastic organization staffed by cool people. They do a great job of connecting people with JRA and helping them understand their illness, spread awareness, and raise money for research.
The Facebook page is great because it allows people to easily connect with others who share their condition. It is not great because it’s Facebook and we all know what Facebook commentary devolves into after 5 minutes.
Ok to be fair not everyone knows what support group Facebook commentary devolves into after 5 minutes. It’s not so much a problem of trolls, hateful arguing, and controversial opinions (except the people who post their hokey miracle remedies). It is often, however, an absolute pity party. An outpour of misery and depression with dramatic tales of suffering and never-ending woe.
To give you an idea, here is a dramatized example of a support group Facebook post:
Debbie Downer- Today I underwent the most painful procedure of my life. The doctors drained my knee. Here is a photo of what these sadistic humans did to me…
(IMAGINE THIS IS A PICTURE OF A HORRIBLY INFLAMED KNEE JOINT BEING PUNCTURED BY AN ENORMOUS NEEDLE AND SQUIRTING BLOOD)
Not only that, but now I am on a higher dose of medication that causes me to vomit every 12 seconds and crumple to the ground sobbing profusely every 35. If you think this sounds bad, just know that it is nothing compared to the pain and suffering I experience EVERY DAY OF MY LIFE. For me, even taking a dump is a task more strenuous than any task undertaken by any human in the history of the world. So while you sit there… crapping with ease… and having absolutely no valid problems of your own… I want you to try to imagine the torrent of hellfire that is coursing through my poor disabled body. My suffering will never end as the cruel and debilitating disease, that has torn my life to SHREDS, has no cure… It has killed every one of my dreams. I will never find love. I will never feel joy. Hope is dead. NONE OF YOU UNDERSTAND WHAT ITS LIKE! And you can never blame me for anything I do wrong because all of my negative characteristics can be attributed directly to my illness.
This sort of thing is no fun to read. It’s like watching The Trojan Women unfold before your eyes (For those of you who don’t know The Trojan Women is a Greek Tragedy featuring a number of weeping women.) I mean, to be fair, being diagnosed with a chronic illness really sucks and living with one is hard. It’s one of those things where you can’t judge people unless you’re going through it yourself. But since I AM going through it myself, I get to judge all I want! And judge I do… Because any person who does not handle their illness in the exact manner I do is a lesser human, OBVIOUSLY.
Sarcasm aside, I feel like the point of support group is to foster a sense of community between people who understand each other. It’s a place to share tips and information and help one another focus on the positive. I guess it isn’t NOT (double negative- sorry not sorry) a place to vent? But the endless pity party nonsense drives me crazy when I see it. I am generally really positive where my arthritis is concerned and I don’t want to get sucked into the pit of despair by people who would live there regardless of whether or not they were afflicted with any condition at all.
Anyway that longwinded explanation brings me back around to the actual story part of this story…
One day the Arthritis Foundation posted a status on Facebook asking their followers to share what they had accomplished that day in spite of their illness. This post attracted a large number of Trojan Women type responses (in my opinion). So, though I never comment on these types of things, I decided to share. I wrote: “I used as many spoons as an able body!” It was supposed to be funny… It’s a Spoon Theory reference.
Quick Explanation of Spoon Theory:
It’s very widely known, in the chronic illness community, as a means of explaining “a day in the life” to the able bodied people. Imagine that every physical task, including the little things like getting dressed, walking to the bus stop, taking a shower, etc. costs you a spoon. Able bodied people have a lot of spoons to spend! People with chronic illnesses have very few spoons and once you run out of them… you’re fucked I guess. I never understood why they chose spoons and not like… gas or money or things that actually deplete over time… But you get the point.
Does spooning cost you a spoon? Does it only cost you a spoon if you’re the big spoon… The spoon-er if you will? Because by doing the spooning you are taking physical action. Being spooned has to be too passive to cost you a spoon right? These are the questions that keep me awake at night..
Anyway, I made the comment to lighten things up. Then I forgot about it as one does. Several weeks later, I was tagged in a photo on Facebook by one of my fellow arthritis buddies. I went to take a look, assuming it was something horribly embarrassing because when is it not? And I wasn’t wrong. This was the picture.
This folks is from the latest publication of the famed magazine “Arthritis Today.” As you can see, I have been quoted in an article they published. My name is in there IN BOLD, thank God, because I definitely need credit for that brilliant quote.
My sarcastic comment went from Facebook to magazine print without my knowledge. It’s in Arthritis Today! That’s a big freaking deal people!! Do you know how many of my friends are subscribers to this magazine?!?! The entire relevant world OK?!? So that’s embarrassing.
And that’s how I learned that the things you say on Facebook are fair game for publication. Nobody has to ask your permission, or even notify you for that matter. It’s a thing in the user agreement you never read. So beware! And as always, think before you post! Or you too could end up published in the latest edition of Arthritis Today Magazine…. and then be tagged in a Facebook post about the article completing the circle. No not the one Simbas father sings about, I mean the circle from Facebook to Magazine to Facebook. And now Holly’s Facebook status about my Facebook comment in a magazine has been published without her knowledge or consent on my blog. If you share this on Facebook it will be a complete circle within a circle. It’s social media inception.