It seems that since my diagnosis, whenever I tell a person that I have Lupus I hear the phrase "But you don't look sick". I can't help but wonder whether or not this is a good thing. Sometimes I'll take it for the compliment that they meant it to be, that I look like a normal 22 year old female. But the bottom line is, it means that I am not the same person I used to be. Trust me, I "act" like a healthy person to the best of my ability. I take on this role as if I will someday win an award for best portrayal of a healthy person. But the downside is that there is no trophy, there is no prize, and I just end up alone with my feelings and everything I have kept inside. I act like I don't care--but I do. I act like I am not scared--but I'm terrified. I act like I'm okay with my diagnosis--but I'm not.
I've always been told that I am outgoing, social, and funny. One person even went so far as to describe me as a "glowing person". I have the ability to walk into a party not knowing anyone, and then walking out with everyone knowing my name. But they don't know the real me. What they see is a very calculated illusion of the healthy girl I want to be. I hate the word "illusion". I hate the negative connotation it brings, but that's what it is.
The illusion started about two years ago when I first started to feel pain. The pain got worse, and keeping my sunny personality got much harder. The illusion blossomed to wearing a bit of foundation to cover up the pale face and dark circles under my eyes--clear-tell signs that I don't sleep well at night anymore.
Now I am finding that my simple illusions have become much more complex. The worse my Lupus gets, the harder it is to keep the healthy persona going. Now I have more difficult choices to make--hair up or down? How much hair is falling out today? Did that clump of hair that was on my pillow leave a noticeable bald spot on my head when it fell out? How cold is it going to be there? Can I get away with wearing gloves to keep my fingers warmer so they don't turn blue?
It seems that now when I meet a new person, before I can even begin to consider whether or not we can be friends I must decide if they can handle my life. Can they handle my energy highs and lows? The billions of things that I am now forced to obsess over on a daily basis? Normal healthy people obsess over TV shows, sports, shopping, movies. I enjoy all of these things as well, but I can't obsess like normal people can over these things. I don't have the time, nor the energy to do so. I have to live my life different than everyone around me. I have to think about just getting up out of bed. I need to think about my medication. It's like I'm living in my own little world, with different issues, priorities, and an entirely different language that only I can speak.
When I speak to another sick person, I feel a level of understanding and pure comfort, around the people who understand both me and the "acting" me. They know me both. They know that with me, you get the real and the fake, simply to survive. My closest friends understand that. They can dig through the illusions and the crap and find me somewhere deep inside.
I once read somewhere about the "secret society of the sick". I am proud, but not lucky, to be a member of this society.
Don't get me wrong. I love my life. I love my friends, and I especially love my family. But there are so many things that I hate.
I hate people seeing me when I am sick, especially when I look sick.
I hate that my beautiful hair is falling out one curly strand at a time.
I hate that I had to take incompletes for my classes because I got too sick to finish up the semester. It makes me feel like an invalid.
I hate that everyone thinks that at any time they talk to me is another opportunity to give unsolicited medical advice.
I hate that I see my doctor's more than what I see some of my friends.
I hate living up to expectations of what a healthy person should be.
I hate living up to expectations of what being sick is.
I hate people who judge, give me advice, or questioning stares of how I handle my diagnosis or my life.
I hate that this is affecting my parents as much as it's affecting me.
I hate seeing pain in my Mother's eyes when she watches me grimace when I stand.
I hate feeling like I am not strong enough, agile enough, or beautiful enough.
I hate that I can't seem to explain to my family, whom I love more than words can describe, how I feel on a regular basis.
Basically, I hate letting people see the effects of my disease. I don't care if they know that I am sick, I just don't want them to have to see it and/or deal with it.
Therefore, I don't let them. In a weird way, this puts me more in control. I get to pick who knows the real me. I decide who to let in. It isn't so much a pride thing for me, as much as I don't want a watered down life. I don't want people automatically giving me the simplest option because they don't think I can handle it. I am a fighter. I always have been, and always will be. But I want to be able to decide if I can handle it. I want you to like me and love me because you think I am a good person, not despite the lupus--but maybe because of it.
I live in two worlds--the world of the healthy and the land of the sick. I am understood in the land of the sick, but I don't have nearly as much fun as I do in the world of the healthy. In the land of the sick I worry, I rest, I take meds, I go to doctor's visits faithfully, and I live a life of pain. When I talk to another sick person, these things are on the surface. It is easy to become depressed, or to start focusing on the negatives.
In the world of the healthy, I am forced to overcome my sickness in order to survive. I play tennis, I run, I laugh, and I have fun. In the world of the healthy, on one of my good days, I can almost forget that I have Lupus. I can almost be a normal person again.
But then the next day happens. And I'm back in the land of the sick.
The bottom line is, I straddle these two worlds. It is not my choice, but it is because this is who I am. I will have my good days and my bad. Sometimes, there will be days when I am the funny, cute girl that is a "glowing person". Then a day later or a week later, I may be that really sick girl whose glowing personality is now a distant memory. I'll be that lump of agony lying on the couch, assuming I was even able to get out of bed that day. It's all about when you catch me.
I am doing my best. I want to live in one world, with one life--no acting. But sometimes I think the illusions are easier for you to live with, so I continue my acting.
There are so many things I wish people knew about me, but I won't say. Because they don't ask and when they do, they aren't truly listening. They just pay no attention to the girl behind the smile...
*Adapted from an online article
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