The year 2012 has brought about a deep rooted desire to revamp my goals, I pledge to spill my colorful thoughts onto this blank canvas called the internet. In the past few months I have been lacking the energy to focus on writing due to various problems that WE all encounter in life. However, I have found it necessary to expel the abundance of verbal fluid on my brain to not remain stagnant in today’s society.
Recently aside from all the things that travel through my mind daily there is one thing that sticks out, like those bright neon wigs Nicki Minaj enjoys wearing, I have lupus. To be more specific I live with Systemic Lupus Erythematosus, better known as SLE.
SLE is by definition an autoimmune disease, which means the body’s immune system mistakenly attacks healthy tissue. In short the body is going “dummy,” and riding the yellow bus without the “dread” shaking.
Yup, there it is. I said it! WOW, that feels so much better. I mean you have no idea how much lighter I feel saying out loud that I usually have no energy and have sun sensitivity and that my joints pop and snap like breakfast cereal.
I love questions and comments about my current medical situation, I even welcome them with open arms no matter how swollen they may be. There is only one comment that touches my soul, makes me angry, upset and frustrates me to no end, which is often stated once I reveal my illness, “But you don’t LOOK sick.” Mind you, no one has effectively been able to express to me what exactly sick looks like (In my own weird thought I imagine sick to look like Johnny Depp in a Tim Burton film). Now in cases such as this I would like to remove the filter between my mouth and brain and say exactly what is on my mind. However, I choose not to, only in the interest of forward progress and keeping my stress level down.
There are so many things that don’t LOOK like you think they should or could look. Like Kim Kardashian without makeup, or RuPaul dressed as a man. It sort of vaporizes a person’s preconceived notions once you know the truth. Saying “you don’t look sick” to someone with an “invincible illness” is like telling a child you hate the paintings and drawings they make for you at school. If you are one of these fantastic offenders please make an effort to remedy this quick, fast and in a hurry and if you are one of those people who don’t encourage your child’s creative process, I’m sure I can come up with a totally independent and lengthy dissertation just for you…
If an individual is not on crutches or using a device to assist with their day to day mobility that doesn’t mean that there isn’t an underlining issue present. While any illness has its roller coaster rides, living with a chronic issue can be just as debilitating. For Lupus patients, waking up with swollen limbs and aching joints is a part of just that debilitation. Anything from depression to extreme fatigue, hair loss, weight loss, loss of concentration, and for many people organ failure including but not limited to kidney failure. These are just a few of many of the day to day trials we Lupus patients face. So before you say or think to speak, ”But you don’t LOOK sick,” make sure your mouth consults with your heart first to discuss how you would feel if someone made you feel worse on top of your daily struggle to keep your head and hopes above water.
My hope is that people will become the change they want to see in the world. When a person is battling with something you can’t see or even fathom yourself living with, I petition you not to say,” But you don’t LOOK sick.” Or, “But you look FINE.” If you don’t know what to say, a hug speaks volumes, a smile can soothe sore joints and laughter, well laughter is right at the top of the list with a cure.
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