What You See & What You Get

In NY, being silly..that took a lot out of me

"There is one consolation in being sick; and that is the possibility that you may recover to a better state than you were ever in before."
Henry David Thoreau 

"How are you feeling?"

"Good. Well. I'm feeling better."

"Well, you look great!"

And I chuckle. Because I truly do wish that my rosy cheeks, cute hair and fashionable clothes were a true measure of how I am "doing." But the truth is, when you live with an "invisible illness" what you see is not often what you get. What YOU see is a healthy 28 year old female, out with her friends on a friday night forcing a smile and a laugh to try and forget the fact that she forgot to take her blood pressure and if the heart palpitations she's feeling right now mean anything this time. What YOU see is someone who has "recovered" well from her brief stint in the ICU. What YOU see is someone who isn't as sick as she claims to be.

I have friends in the chronic illness/invisible illness/auto-immune disease community that often complain about people telling them that they "don't look sick." There are many websites, blogs, and community boards dedicated just to this idea. But I've actually never heard anyone tell ME that. I get something just as bad: "you look great/you look good." Followed by the awkward laugh or the nervous smile because they genuinely believe they're giving me a compliment. And yet, on the inside I cringe and have learned to smile politely, grit my teeth, and respond honestly: "Thank you, but it's not easy."

I know these words are said with kindness and they are "meant" to be a compliment. But what the non-sick person doesn't get is that with those words you belittle my experience. You negate the pain and the fatigue that I feel on a daily basis. You insinuate with those words that because I "look" healthy I must be fine. And yet, if I were to tell YOU after a heart break that you looked "great," I doubt you would find those words comforting or helpful.  I make the comparison because heart break cannot be seen, only felt, and invisible illnesses are the same.

Over the past week I have been a real social butterfly. I've been dancing, drinking, out to dinners and lunches, poetry readings, the movies and the mall. By all appearances I am "back to normal." I have been asked over half a dozen times how I'm feeling. How's my health? And every time I honestly reply that I am "better." Because by comparison, I am in a better place than I was two months ago. However it is not without its struggles, challenges and work. I work very, very hard to "be better." And I often debate whether or not I should work hard to "look" better or if I should let my illness show.

Should I wear makeup today or not?
Should I take on the challenge of wearing heels or will flats have to do?
Should I flat iron my hair and be tired for two hours or just wash and wear?

I may not have a job and many of you still don't know what it is that I'm "doing" right now. But these questions, these every day processes ARE a full time job. (What to wear because my hands can't grip buttons or zippers today/What to eat because my heartburn is acting up and it burns to drink a glass of water/What to do with my hair because I can't raise my arms above my head for longer than 15sec/What to do to keep from going stir crazy in the house because I'm too dizzy to drive anywhere and I have to avoid sun exposure for fear of developing skin cancer....and on and on)

Cat Scan of brain on honeymoon

The average person takes for granted how easy it is for them to get up in the morning. I debate whether or not to put on makeup because I fear looking "too good" and then everyone will think my illness is a sham. But I also have to remind myself that it's not about them and their opinions. It's about me and I feel good when I wear makeup. Even it does take me twice as long to get ready. I too, despite my illness, want to feel pretty even if everything inside of me doesn't.

The reason I "look good" is because I'm heavily medicated (which comes with its own set of challenges on top of what my disease is already doing to me). And I just spent the only energy I had for the day getting ready to show up and look "this good." So please don't mind me if I don't get up to hug you hello or goodbye. Please don't mind if I just sit here in this booth/chair and smile and laugh because it is all I CAN do.

Staying at home and taking care of me is not as exotic or enticing as people think it is. Please, don't be envious. I'd much rather have the energy and the enthusiasm to get up every day and actually use my degree. I'd much rather put on makeup out of vanity and not necessity. I'd much rather look good AND feel good too. I'd much rather bake, meditate, craft, cook, clean and write only because it's fun and not because it gives me something to do other than worry about relapsing or praying for remission.

I am getting better and I am getting stronger each and every day. I am at a healthier weight than I have ever been. I have a better attitude about life and the future. I see things more clearly and I have a stronger spiritual relationship and connection with God than ever before. This illness and these flares have awakened a newer/better me. And for that, I am thankful. I am forever grateful that I am not a "normal" 28 year old shallow and misguided female. I am glad Scleroderma slapped me in the face and told me to wake the hell up and follow my dreams already. I can't say that I would change that for anything. But I know what it has taken me to get to this place and I need those who want to be a part of my life to know it as well.

And while I appreciate the well-intentioned remarks I ask for one thing in return. Don't ask how I'm doing (with the subtext of bringing up my health) if you're not willing to hear the truth: "I'm better, but it takes a lot of work and it hasn't been easy." And trust me, I'll know you aren't willing to hear the truth because you will get awkward and you will change the topic. And the truth is, I will let you. But the next time you ask, what YOU will get is a fake smile and a lie, because you're simply not ready for anything more.