Pay no attention to the girl behind the smile…

It has been said by many people that I am a very good actress. “But You Don’t Look Sick” seemed to be all I heard. Is this a good thing? Sometimes it is an appropriate thing to say after a speaking engagement, or when I used to act in class, etc. Most times I take it for the compliment it is, all the while smiling, knowing exactly what it doesn’t mean. It simply means I am not the woman/ the girl I was before. I “act” like a healthy person the best I can. I take on this role as if I will someday win an award for best portrayal of a healthy person. The downside, is that there is no trophy, there is no prize, 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 am.

Most people use the “acting” comments as a way to tell someone that they are outgoing, social, funny or even dare I say sparkle. There are those people who walk in a room and you know you want to hang out by them. Well, that is me. I have the funny story. I get groups of people up and laughing. I walk in not knowing a soul, and leave with everyone knowing my name. What they don’t know is that this really isn’t me. What you see is a very calculated illusion of the woman I want to be. I want to be everyones friend. By all means I hate the word illusions. I hate the tone it puts out there for others to decipher, but being plain old Christine is worse.
The illusions started small like putting on extra blush to cover up when my Lupus rash showed. Then I learned how to put on fake eye lashes to fill in when my hair started falling out. A little extra lip gloss goes a long way….It gets you farther if you remember to out it on. That is just some of the tips and ways of my disguise.
Now comes the real “art of War”- the real plan of attack. Before I go anywhere, I need to know if I am even able to drive. If I am not, can I get a ride. I need to plan to pack a huge (but cute) pocketbook to make sure it holds all my medications that I need, and my “in case of emergency” type things. Now with all this time that has past- I am already late to wherever I want to go. But now I still have to plan the outfit from the feet up, and base every choice on how good or bad I feel. Should I wear my hair down? Or is it falling out and maybe more will come out and embarrass me. Should I go spray tanning, or go all out with the make up to cover for the fact that I am a walking zombie that needs many layers of blush and concealer. Now onto the clothes…. well, will it be hot? cold? Does this night involve alot of sitting (ouch-pain) or standing/ walking which could put me in worse pain if given the wrong choice. Don ‘t even get me started on the big shoes decision.
I would rather say that I am fashionably late to a party by making up some lavish crazy story, which then draws the conversation close and the intensity closer. The truth is, If I was to ask you if you wanted to hang out with me – I know I would not be your first choice. I am not saying that to gain sympathy. I am saying it because everyone wants to mingle/ hang out with the sick girl— But god forbid something grows out of that chance meeting…. what now? Now I need to worry about if this person can handle my life, my choices, my energy highs and lows, The billions of things I am forced to obsess over on a daily basis. Normal healthy people obsess over shoes, shopping, what to eat, make up, TV shows, whatever. Don’t get me wrong… I enjoy all of those things too. I just can’t obsess, because I quite simply do not have the energy or time, or dependable pain free day to count on. I have no choice, I have to live my life different from everyone else around me. I have to think about just getting up out of bed. I need to think about my medication. Do I need to stand for long periods of time? Where is good for me to eat, transportation etc…. Just so many little things that people do not put much thought into at all.
I have thought about these things so many times, it is like living in a different world, with different issues, different priorities, and an entirely different language that I can only speak. There are times when I do let go and speak to my sick friends and it feels like a light bulb has gone off – or maybe a switch has been turned on – but 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- just to survive. If you are a good friend you can dig through the illusions and the crap and find me somewhere inside. What can I say, It is the “secret society of the sick” and I am proud but not lucky to be a member.

 
I hate people seeing me when I am sick and especially when I am looking sick. I really hate being pale, with faded eyes and with splotchy skin and bad hair. At least I know that some of these things are things I can work on, but others- they just are. I can’t make this big red blotchy rash go away. So I wear loads of make up or clothes that cover it up. That is my official secret. I am out! I choose what to wear based on how bad I look. I choose where to go, by how far is it. Can I safely drive there, will the people there want to see me and be happy or excited? Will I be able to leave without any financial issues or friendship ramifications. I hate walking around in public with a limp, or worse, a set of crutches, a cane or a wheelchair. I hate not being able to wear tall sexy shoes, because I can not walk in them. I hate trying to quickly think of the much cooler reason for having a cane, or wheelchair. I hate that I don’t know a cooler reason. I desperately wish I was cool.
Big bags are trendy right now. Which is great and very convenient for me as in this role I am playing. My character wears big bags that hold lots of stuff. No one would ever know what is in my bags. Unless one spilled over- which is a nightmare I have often. I pack up every possible medical bottle or device. I pack all kinds of makeup to make me look less ghostly. I bring emergency phone numbers, I bring EVERYTHING.
I do love my life, but I hate alot of things lately.
I hate having so much to say, to blog, to share but my hands hurt too much to type.
I hate popping pills, and having people ask me personal health questions that I don’t want to answer.
I hate that everyone thinks any time they talk to me is another opportunity to give unsolicited medical advice.
I hate living up to other people’s expectations of what a healthy person should be.
I hate living up to other people’s expectations of what being sick is.
I hate thinking about how or when I might die, because for me it might be a “when day” and not a “someday”.
I hate never feeling good enough, quick enough, pretty enough, or just “enough”.
I hate the term “damaged goods”.
I hate that I know my doctors better than I know my friends and some of my family.
I hate that no matter how hard people try, (or don’t try) They will never know the loneliness of being in a crowded room knowing you are the only one who tells time by pills, energy and spoons.
I hate people that are inconsiderate, and make plans without thinking of walking or come by unannounced when a phone call can help you so much.
I hate people who complain, “I need a nap”, “I need some caffeine, I have a headache”, “I have pms cramps”, or even better… “I have a cold… I am Ddddddyyyiing!”. These expressions need to be banned, because they do not
adequately describe how you are feeling and they belittle what pain and sickness I may be feeling.
I hate having to defend that I am a good mother,  daughter, sister, or friend.
Most of all lately, I hate people who judge, and give me advice, or questioning stares of how I handle my diagnosis, or my life.
Basically I hate letting people see the effects of my disease. I don’t care if they know that I’m sick, I just don’t want them to have to see it, or deal with it.

So I don’t let them. In a funny way this puts me more back in control. I get to pick who knows the real me. I get to pick who to share my soul with. I decide who to let in. This isn’t a pride thing for me. I don’t worry about people thinking I’m weak because I know I am stronger then I can even imagine. Despite my disease there has been nothing in my life that I didn’t want to accomplish that I didn’t find a way to. It is like the scene in the Wizard of Oz when the wizard (talking about himself, in a big booming voice) “Pay no attention to the man behind the curtain”. When you watch the movie- everyone knows that the little man and the wizard are one in the same. But because of his presence, his knowledge and might I even say his Sass, the people want to believe in him. He hides his flaws with his smarts and pizazz. My main reason for hiding my disease is that I don’t want a watered down life. I don’t want the simplest option given to me because somebody thinks I can’t handle any more. I want to decide.
I want you to like me and love me because I am a great person, not despite the lupus- but maybe because of it. Maybe having this disease taught me the skill of being a chameleon, mixed with the communication skills of a great counselor, added to a touch of structure and organization from living by the clock and the pills. Maybe I am cautious because I am scared. I live in two worlds- the world of the healthy- where I put my best face out and do anything my heart is set to and I also live in the land of the sick. Here I am understood, but I don’t have that much fun. I worry, I rest. I follow rules, and I live a life in pain. The unfortunate thing- is you really can’t live for very long in two worlds. It is a dizzying, exhausting dance to be two different people. I guess I have grown up a bit. I quite simply do not have the desire to act anymore for you. This is who I am. Good days and bad. Sometimes, there will be days where I am the funny, cute girl that you just can’t believe is sick. Then another day or week later- I may be that really sick girl who used to be funny. It’s all when you catch me.
I am doing my best.
I want to have one world with one life- no acting- just me. I make no excuses any more for my choices, my feelings, my health. I am trying. I am me.
I wish I could tell you all this and more, but sometimes I think the illusions are easier for you to live with. Let’s make a deal, you can pretend I am healthy, and I can pretend I am happy. I am sure it would work for some time… but would it really be working? Do you really care “How are you feeling” when you ask? Or do you want to he me mutter “fine.” There are so many things I wish people knew about me, but I won’t say, because you don’t ask and when you do, you’re not truly listening.

Pay no attention to the girl behind the smile…

 
Article written by Christine Miserandino, © butyoudontlooksick.com