GUEST BLOGGER: “My Secret is safe with ME”

“My Secret is safe with ME” – What I Wish People Knew About MeIt 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 a scribe write for me in class or having 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”.

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This is a great article! Keep reading at Christine’s web site, butyoudontlooksick.com