All my spoons are in all the right places, if you know what I'm talkin' about...
Well, I think most of you suspect what’s coming from me here. That’s right, the spoonies. Spoonie trolls are everywhere, and so many of them have made it to my blog to post some of the best and worst anon messages of all time.
For those who are behind on this, “spoonie” (I know, cringe-worthy) refers to the hoards of people who are obsessed with The Spoon Theory, a highly glorified diary entry written a few years ago about a girl forcing her best friend to cry in public because of how shitty her life is. But you’ve probably been linked to it a thousand times by people claiming it’s a MUST READ for any chronically ill person.
Anyway, the trollish nature of the spoonies isn’t the direct fault of the essay itself, but the vast community around it. It’s a very large group and any large group of people (especially one made up of many young people) is going to have it’s fair share of obnoxious people. But between violent threats, illiterate and crude messages, bullying and teasing, and turning those away who are looking for support, the spoonie culture is what upset me so much.
So, when I first started blogging, Critiquing the Spoon Theory and it’s culture was one of the first things I did. I didn’t expect ANYONE to agree with me, and I did expect to get some hate…but what I received was so much more than that. I was met with a huge community of people who had been burned by the Spoonie kids (either turned away or bullied), and I was met with hundreds of twitter messages, PM’s, emails, and was viewed as the Lupus anti-christ for a while (with some recurring backslides). Plain and simple: these people were not alright with being disagreed with.
((Don’t worry, I tried to make all the very best messages public for your enjoyment))
Still, it would have been easy for me to retaliate in a similar way, spamming inboxes and throwing around poorly spelled death threats back at these people. But doing so would have afforded me nothing but stress. So, I did what felt natural. I laughed at all the terrible spelling and embraced the humor of the situation. I embraced the new friends and connections I made from all those who had similar feelings about the community or who were burned by them. And when someone was mocked by them or turned away for support and came to me, I did my best to be what they needed. I still try to do all those things, really.
There will always be negative feedback no matter what opinion you hold. And there are different ways to handle it. Simply put, not feeding the spoonies is my motto, and I think it’s working out pretty well.
First, I want to say that my entire point is compassion, and that it seems you are misunderstanding me. I’m assuming that you are referring to JUST my disagreements with Spoon Theory, which is not my entire purpose, just a personal feeling I have. I may be a little angrier now, since I’ve gotten several emails from people explaining how they’ve been abandoned by the #spoonie community in a time of need, ian_munro included. But still, it’s just an opinion.
I believe that you are not trying to be condescending or angry, and I appreciate that. However, one of the most condescending things a person can do is tell someone that their arguments are invalid because they are allegedly “young and inexperienced”. Or that since I don’t wish to concentrate on self-pity it must mean that I’m not *sick enough* by certain standards. I have SLE, RA, Chronic Anxiety, Raynaud’s and my illnesses are still the least of my troubles. I have great days, and I have the worst days. Sometimes both last for much longer. I fully understand my illnesses, so please do not suggest that I do not know enough, or feel enough pain or experience enough to say what I am saying. As a matter of fact, I feel that I was more prone to self-pity when I was younger and newly diagnosed. With age and experience and knowledge I feel I have gained enough insight to feel LESS self-pity and MORE empowerment.
I am not invalidating anyone’s pain, nor would I ever want to do that. What I encourage is simply taking charge of your life, your body, and focusing on the good. We can always do that, no matter how bad things are.
I don’t hate anybody for the way they live, but I would really LOVE to see an anthem for Lupus or Chronic Illness out there that promotes strength and taking charge and being informed and spreading intellectual awareness and emotional support. It is my personal opinion that Spoon Theory does not do this. Some disagree with me, but some people agree with me, and those that do are working with me to create our own message. This way, there will be something out there for all of us to hold on to and reference and display proudly.
I realize some people are sicker than others. Try going through my blog again, not just the spoon theory posts but all of it and really look at the diversity of my feelings. I am sad whenever I hear from another person that they are sick, no matter to what degree, but I will not feel bad for you. Because I do not want anyone to feel bad for me. I will lend support, knowledge, advice to whatever extent that I can, but I will not put pity on you. You deserve better.
What I suggest and what I stand for is living your life to the absolute best that you can and being PROUD of that, and finding your own way to be happy with the life you’ve been given!
I would like to say that the compassionate “side” you refer to is more like 90% of me. I devote nearly all areas of my life to different forms of helping people. I’m not saying this to sound superior or something, I’m DEFINITELY not. But I need to say that suggesting I’m not compassionate is just a little insulting. Maybe you didn’t mean it that way, if so I just want to explain how it came off to me.
I may seem too aggressive about the Spoon Theory crowd lately, and well, I personally feel I have reason to be. There have been whole strings of tweets and messages promoting violence and exclusion and elitism toward those who view life even slightly different. And I’ve received a handful of emails and messages about people in a real time of need being tossed to the side. So yes, I do have a problem with that hive mind going on. But instead of continuing this unnecessary fight I will “be the change I want to see”, by continuing to voice my message, and shelling out support and awareness to anyone and everyone that will listen.
If you feel like it, give my blog another look over, try to see that I am not telling people to just get over it, or push through things that they clearly can’t.
All that being said, I’m glad you stopped by and voiced your opinion, it gave me a chance to really clarify myself and to see how people might be taking my message the wrong way. I appreciate that. I’ll be sure to check out your blog just as soon as I post this!
So I’ve been on Tumblr just about a month and a half now, and I’ve posted…a lot. So I was thinking, maybe once a month I’ll post a highlight. Sift through some of the sillier posts and compile all the major things I talked about the last 30 days. So this will be my first one of those.
FIRST I wanna remind you all to KEEP SENDING ME STORIES! I have some great ones in my ASK and reply boxes already, but I want this to be as collaborative as possible!
1. Spoon Theory Garbage: Why I think we need a more positive story in our community, and why I don’t think Spoon Theory is healthy.
2. Depression and Anxiety: The importance of paying attention to your feelings and taking care of your mental health.
3. Benlysta, the new Lupus drug: A good link about the drug, and my thoughts on the positivity of its development.
4. Lady Gaga does NOT have Lupus: The media used her story to spread misconceptions and sometimes blatant lies about what Lupus is.
8. A tool to detect UV intensity, thanks to Thinkgeek.com
9. Dating and Lupus: My advice to anyone with Chronic Illness regarding dating and life!
10. STATISTICS: A compilation of all the scattered Lupus-related statistics out there, neatly packaged so you can know your stuff and spread awareness!
11. What causes Lupus?: All the controversies explained from my point of view.
13: LGBT, domestic violence, rape, chronic illness, sexism, mental illness, racism: Holy Hell people, we need to stick together
bydls man, someone just left a really negative comment on the spoon theory on my site. I still just approved it like all others cause I am honest
So I tried to clarify that Michelles post was not trying to be mean, just saying how the message felt negative to her. But…
Your comment is awaiting moderation.
February 10, 2011 at 6:17 pm
Your comment is awaiting moderation.
February 10, 2011 at 1:15 pm
I guess she didn’t like the fact that I was trying to explain that Michelle wasn’t trying to be mean, just that we prefer uplifting messages.
And then this happened.
when i originally posted this, i put down a bunch of tweeted messages that seemed outrageously angry and hateful towards what I thought was a civil message. But I’m not above admitting I was wrong, I shouldn’t have posted anyone’s twitter handles here. My beliefs haven’t changed, but I’m not here to “out” anyone. I’m sorry if you felt victimized by my post here, but realize I only did so in the first place because I felt attacked by the tweets in the first place.
There were plenty more. The Spoon Theory “crowd” has gone from a silly, but well-meaning message to a kind of elitist cult following.
If you disagree with us, you’re OBVIOUSLY not as sick as us. You would get it if you suffered as much as us.
Michelles message was civil and sweet and well-wishing! That response is just…outstandingly rude. I guess when you’ve conditioned everyone in your life to feel bad for you and someone offers a viewpoint that might stop that from happening…you retaliate.
I apologize. I’m going to go back to writing now. =) Love you guys.
We all know my reservations with the Spoon Theory, and if you don’t, then check this.
Now that that’s out of the way, I can appreciate what Spoon Theory tried to do. That is, illustrating how confusing it might be to get someone to understand what you’re going through, and how the concept of being Chronically Ill is a little bit different than most people’s idea of “sick”. That in and of itself is not a bad message, but Spoon Theory has become almost cult. With everyone calling themselves “spoonies” and
1. sounding ridiculous
2. perpetuating the pity-party that the Spoon Theory promotes
Spoon Theory has had it’s time. Why don’t we create something new? Something that we can do collectively. Something that will really represent how strong we all are, while still remaining informative to our healthy counterparts.
So why don’t you guys send me in a story, or a paragraph, or even a sentence or two telling me how you explain/explained your illness to someone you care about.
1. It doesn’t matter if your story is sensational or perhaps boring and clinical. Send it.
2. It doesn’t matter what your illness is, as long as it’s labeled as “chronic”. Not that I wouldn’t love to hear other stories about other sickness, but for the purposes of explaining “chronic” illness…
So you can reply to this, or send it to my ASK. And then, what I am hoping, is that somewhere between all those stories we can meld together a neat, catchy, informative and strong message. Maybe with permission of whatthejules, we can slap it up under Chronically Awesome, or publish a new website. Anyway, let’s see what we can do!
So, what’s your story?
I don’t know, maybe I’m the only person with Lupus with any self-respect, but this Spoon Theory business has GOT to stop. For those that are unfamiliar, let me share with you this piece of crap, poorly written, masturbatory pile of self-pity and attention-whoring.
If you’ll notice, the host website is also a plague in the Lupus community, as the whole “But you don’t look sick” trademark is based on the idea that we need everyone to know we have Lupus so that they can treat us differently, give us more leeway and essentially feel bad for us. And among those people, the Spoon Theory story is hailed. It’s sent around as a ‘must read’ for anyone with Lupus or anyone who knows anyone with Lupus or anyone who might ever run into someone with Lupus. But it’s garbage. And that really grinds my gears.
It starts with Christine (author) explaining that her good friend in college asked her once what it was like to be sick with Lupus. Ok, good start! Until of course we find out that this is a RIDICULOUS question for her to ask, since this friend has seen Christine throwing up and being in pain. Which is, as we all know, the entire definition of Lupus.
So Christine can’t for life of her find words to explain Lupus well enough for her friend to understand (it’s just so complicated), so she grabs a bunch of spoons. Her friend thinks this is all a joke or a game, because how friggen serious can somebody be if they’re handing you a bunch of spoons. But as Christine illustrates with one of my favorite sentences of all time, “Little did she know how serious I would become?”
Christine hands her friend the spoons, and tells her that the spoons are basically her health/wellness, and asks her friend to talk her through a typical day in her life. She then starts taking spoons away from her for every tiny task she does, saying things akin to ‘you can’t just get out of bed, you idiot. People with Lupus need to haul themselves up on a pulley system’.
By the way she’s illustrating the severity of even the simplest tasks I’m thinking to myself, “biotch you need to take better care of yourself if the consequence for brushing your teeth too hard is a day in bed”.
So by now her friend is crying, because who wouldn’t cry if you thought your friends life was a constant, endless nightmare filled with nothing but pain, sorrow and the promise of more pain and sorrow. Now to place a cherry on top of Christine’s self-righteous smack in the face of her ‘best’ friend, who is in tears over her poor-me 101 explanation, our narrator says this:
“I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
In short, my time is fracking precious, but I’m choosing to sacrifice it to the God’s of agony that ruin every moment of my existence in order to spend time with you. So be greatful you privileged healthy person, you.
I don’t know. Maybe I’m too critical. Or maybe I just can’t relate because when I was in college I didn’t assume my friends were morons, so when they asked me what Lupus was like I didn’t hand them a spoon bouquet and a pity party, I just told them.
Boy, did that feel good. I think I just earned myself an extra spoon.