Lupus Never Looked So Good

Blog post I wrote yesterday! Check it out guys!

More serious and I’m depth original articles can be found there. :)

A blog post I wrote a few days ago about the desire to find someone or something to blame for our situations.

The goal has been reached, but we will continue to fund raise until Christmas Day!  Thanks so much to everyone who shared this and to everyone who donated!  I’m so proud, and SO EXCITED to not only be donating this money to the Chronically Awesome Foundation, but also to see my dad chop off this 39 year old mustache!  Amazing.  

santaduhlek:

helloelloh:

itwaslupus:

I can’t.  My whole brain is crying with laughter.  I can just see what’sherface crying “oh no, my shitty essay, excessive ad placement, and exploitative and exclusionary tactics have made me money and internet fame”

It’s just, so sad.

Seriously though, “why Chronically Ill people NEED the Spoon Theory to be just for us”???  We don’t.  We don’t need to be enveloped by negativity and self pity all the time.  In fact, research would suggest we need exactly the opposite of that.  But even if you assume that we do need that, why on earth would it be a bad thing that people outside the Chronic Illness community are empathizing and relating to us by adopting “our” sayings?

It’s not in any way, shape, or form comparable to say, white people adopting the N-word or straight people adopting “fag” or something stupid like that, because the word “spoonie” is not and has never been a derogatory term used to disenfranchise an entire population for centuries.  So please don’t even TRY to go there.   

It’s very possible for a saying to mean different things to different people, in fact that’s usually what happens when something gets popular.  Just look at all the different uses of every single meme on the internet, hell, every word in the dictionary.  

And y’all should be damn grateful that your particular phrase has become popular, so much so that I have to explain to every new friend I make that, no, they don’t have to feel bad for me constantly because my life isn’t made up of constant turmoil and inescapable torture.  Because, of course, whenever someone I meet learns I have Lupus, they google it and find this internet pity party everywhere and assume that I’m a part of it.   But for those who ARE a part of it, for those who LIKE the Spoon Theory way of living, you should be damn proud and damn grateful to see your culture expanding.  

I…

completely disagree. It’s not about it being too popular, it’s about people using a terminology for themselves that does not apply to them.

I don’t know how to explain it. When someone tells me they “used too many spoons” for a day, when they’re perfectly healthy? It’s incredibly aggravating and hurtful. Because being healthy means you have pretty much neverending spoons. It’s just as easy to say “i overdid it today”, or “i’m maxed out”, than to talk about spoons. If you don’t wake up in the morning, and try to think of what you can and can not do and what would be too much - and you dont have to ration out tasks - then you don’t have spoons. 

When referring to proverbial spoons, you’re referring to the ability of a chronically ill and disabled person. That’s what it means. 

For so many of us, the spoon theory is something that defines us. We don’t know how to explain the way our lives can be and the challenges we face day to day - and when we read the spoon theory for the first time, it’s like a beacon. You read it and… YES! YES! That is exactly how it is! That’s exactly how to explain it! It’s exciting, to have something out there that you can finally use to describe yourself, to try to get other people to understand. 

And its hurtful, when those people use it. Because if you use the term “spoons” when you are healthy, that means that you don’t really understand it. 

Calling yourself a spoonie, and talking about spoons - thats not self pity. That’s not pathetic, or asking for people to feel sad for you. That’s trying to explain your life in a way that people can understand. 

Asking you not to use spoons when you’re healthy is not asking you to feel sorry for me. It’s asking you to respect me, and my limits. 

And using the spoons for yourself - is the exact opposite of that. The reason the spoon theory was created was to make a bridge of understanding. So I’m sorry (i’m actually not) if I feel annoyed by you using something that doesn’t apply to you when it shows a blatant lack of respect or understanding. 

In summation - the spoon theory is made to help healthy people understand what its like to be chronically ill. Using that for themselves is doing the EXACT OPPOSITE of that. 

^That and 

“And y’all should be damn grateful that your particular phrase has become popular”

no

nonononononononononononono

no

Do not tell me that I can’t pity myself because I can’t function like a normal person and live my fucking life

do NOT tell me that I should be grateful that healthy people think they can compare their pain to mine

no

Lots of people have told me before I knew I had fibro/chronic fatigue (And still tell me) that “Everyone’s tired!” or “Everyone’s back hurts!” and it’s so fucking insensitive

no

Healthy people using the phrase are not comparing their pain to yours. They are empathizing and using a phrase to describe their own struggles- which are completely legitimate.

Either way, the spoonie community’s desire to alienate people and ensure that it remains exclusive doesn’t shock me.

And in case you were wondering, I’m not a “healthy” person. I am in fact a very sick person. I just also happen to want to be positive and inclusive.