Imagine the pain you get when you’re constipated. Then throw in the cramps you get when you have diarrhoea; doubled over in pain and unable to focus on anything but your stomach and getting to the toilet as quickly as possible. Then imagine that uncomfortable feeling of a full bladder. All of this pain makes you bloated and feel 20kg heavier than you are. So you lose your appetite in between being told by everyone what and what not to eat.
But it doesn’t stop there. You know how exhausted you feel when you have the flu? Minus the runny nose and sore throat, you have this as well. Your body and joints ache and it takes all of your energy just to get out of bed and walk down the hall to the bathroom.
Now imagine living with all of this while being intoxicated. You’re dizzy, nauseous and no matter how hard you try you can’t string a sentence together. You get confused over everything and people look at you like you’re an idiot.
This is how I live every day, but despite the difficulties I face I’m expected to put on a happy face, ‘suck it up’ and get on with it. Society doesn’t believe I have a disability because I just plain 'don’t look sick’. I’m laughed at, mocked and more often than not have people roll their eyes and moan when I want to talk about my experience.
So what do I do? I put on a mask and hide my pain. But you know what? This method of coping fucking sucks. I only get given a certain amount of spoons a day and too many of them are wasted on pretending to be healthy. No wonder I’ve isolated; but what does that fix? It gives me time to rest, but also leaves me friendless and lonely.
My message is this: stop expecting everyone to be perfectly fine and disliking them if they’re not. Diseases like crohn’s and colitis are incredibly difficult to live with. We just want normalcy for when we’re not fast asleep or locked in the bathroom. I know it’s hard to gain perspective on invisible illness, but just think; your spoonie best friend just agreed to go to the movies with you despite feeling like a crampy, constipated, confused, flu-ey drunk with the inability to eat popcorn.
This fella here is the great and awesome Brett Dennen. A fellow UC grad and Californian, Mr. Dennen has been cranking out great titles since 2004. With songs such as “Darlin’ do not fear” and “Surprise! Surprise!” he keeps it up beat and and cheerful while still managing to somehow relay a moral lesson in each song.
When listening to his music you definitely get a vibe of his California roots and slight under tones of Paul Simon whom of which Dennen himself named as one of his great inspirations. He currently has four studio albums of awesome music with his most recent released in 2011. I for sure want to hear more. so how bout it Brett?
Fotos tomadas de mi balcon en Ñuñoa, Junio 2013. Lo que se ve de fondo es providencia y costanera center (mordor). Tambien se ve el Campus Oriente de la Universidad Catolica, una palmera falsa que en realidad es una antena de celulares y unas palomas que pasaron a saludar.
True Life of Living with A Chronic Illness: How do you Work, Go to School, Have a Social Life when your Quality of Life is Crap?
Today my brain is as much a mess as my body.
Just… I don’t know how I’m doing it.
It’s crazy isn’t it? How strong we are without even realizing it. Maybe strong isn’t the right word for this. It’s not strength; it’s something else. It’s growing accustom to functioning with such a low quality of life that it becomes your new normal and then you begin to lack the capability of realizing how sick you actually are.