Growing up, I was never one of those people who marched to the beat of their own drum.  I watched with envy the girls who had a fashion sense all their own and a fun quirky hairstyle that made them stand out in a crowd.  I wished frequently that I was the type of woman who said exactly what was on my mind with a ‘devil-may-care’ attitude.  I wished it didn’t bother me so much what people think of me, but it did. 

All I wanted was to “fit in” and be considered normal.

Even into my 20’s I craved acceptance and strived to blend in with the crowd, the comfort of the masses always seemed like a comfortable slipper that I just couldn’t bear to throw out.  I was always afraid of stepping out onto the ledge and standing for something….for anything.  Looking back, those years spent conforming are my biggest regret.  As I quickly embark towards that monumental day each year that puts me in another age bracket on applications (proudly celebrating the 16^th anniversary of my 21^st birthday), I can’t help but reflect a little on the last 10 years, and how Lupus has changed me…not only physically but spiritually. 

I distinctly remember hearing those words over the phone that night in late April 2001; “Your blood work came back severely abnormal, I’m sending you to a Rheumatologist….now.”  I had no clue what lay ahead of me or just how much my personality would change over the next decade.  Slowly, that girl who just wanted to be a face in the crowd and who changed her thoughts and ideas to suit those around her disappeared.  Chronic illnesses will change everything about you…sometimes for the better…sometimes for the worse….and sometimes both at the same time. 

Before Lupus, I cared too much what image I portrayed.  I was scared of saying the wrong thing, acting the wrong way or being the unpopular opinion that stuck out like sore thumb.  As each new pain and symptom appeared year after year, that fear transformed into something I had never known.  It became strength.   I suddenly realized that whether I liked it or not….I was different…more different than I ever dreamed I would ever be.  I’m not like most of my “out of the box” friends; in that I can’t just hop in the car for a spontaneous shopping trip….I have to determine where said store is and how far I will be required to walk.  I also can’t go for that weekend getaway without making sure I have at least two days at the end of it to recover from “relaxing”.  Long gone are the days of flying by the seat of my pants and throwing caution to the wind.  Caution is one of the defining nouns of my life now….cautious what I do, cautious what I try, cautious what I say, cautious what I agree to. The list goes on and on and on until the list of what I CAN do can fit on a Post-It note and the list of what I CAN’T do rivals War and Peace.

 I have more rules for myself than I can remember sometimes; don’t go out in the sun or you’ll break out in some mutant rash that makes you look like you’ve been swimming in Kool-Aid, don’t leave without hand warmers or your hands and feet will turn blue and go numb for hours and be for all intents and purposes…useless, don’t stay up too late or you won’t be able to get out of bed for two days, or don’t type too much or your fingers will swell and cramp like 10 overly cooked breakfast sausages.  Those who suffer right along with me know that what I have just listed doesn’t even begin to scratch the surface of “Spoonie Rules”.

I just totally took a turn and went left of center of my opening paragraph, but I promise this will all tie in together, so stay with me here.  As I realized that it was no longer even possible to be like my friends, I began to find my voice.  Of course, by voice I mean the courage to speak out and dare to be different…not the singing karaoke kind…I wouldn’t do that to unsuspecting ears.  I found social media, I found blogging, I found fundraising.  I found me.  The scary things that always had me cowering in the corner and pulling the invisibility cloak up over my head suddenly weren’t as petrifying as they once were.  I began to speak out and stop hiding behind the desperate need for normalcy. I stopped keeping my illness tucked away in my back pocket and for the first time, let the world know from the word “go” that I was different….I was sick. 

Before I knew it, word had spread like wildfire and within a few months time, I found myself a chairperson on the steering committee of the new LFA walk in my community.  I shocked myself by calling old business contacts and spilling my “sick secrets”…all in the name of corporate sponsorships.  I found myself soliciting donations with weekly, sometimes daily, updates on Facebook that chronicled my struggle and fundraising goal attainment.  Word had spread and I came face to face with the decision to pull back or run full force into the unknown with nothing but a thin layer of snark protecting me.  As I wrestled with my dilemma, countless people came out of the woodwork, told me of their own struggles with a chronic illness and thanked me for being honest and brave about what I lived with everyday.  They told me of their reluctance to reveal their own battle with their disease for fear of being told those famous five words.

But you don’t look sick.

I knew those words well, hated every syllable of them and braced myself for even more of them now that my secret had been “outed”.  Little did I know that those same five words would soon take on a different meaning for me.  Soon, those five words would connect me to a worldwide support group and a creative and emotional outlet that I had been searching for.  Sitting at my desk one day at work, I googled those same five words and happened upon a website.  I read the headline and rolled my eyes at what this sophisticated search engine had directed me to.  The Spoon Theory.  I had no idea whether it was a flatware appreciation board or some sort of x-rated fetish site, but I wasn’t about to click and find out.  Then the words electrified on the page and glared up at me like a neon light.  Sick.  Lupus.  Pain. I had found what I was looking for.

I sat and re-read The Spoon Theory four or five times and cried harder and harder each time I did.  Finally.  Finally someone had found some way to express my life to those lucky enough to not live each day wondering when the proverbial other shoe will drop.  I sent a copy to everyone I knew….family, friends, co-workers and every spam email I received.  I wanted to get more involved and be a part of this community…this support group…these Spoonies.

One typed phrase changed my life’s direction and one response back provided the path.  I had already been stalking this Spoon Lady on twitter and facebook, like any self-respecting groupie would do.  She was, after all, a celebrity of the sick world.  I had always possessed a passion for writing and I was so inspired by her articles that I posted innocently one day on my twitter page; “Does anyone have recommendations for a blog hosting site?  @bydls has inspired me to write about my illness.”  A few hours later right there in my response timeline was an answer from Christine; “Feel free to ‘test out’ the waters by guest blogging for me. Email me.”

The rest, as they say, is history.  I poured over my first article like I was sending my first born off to an unguided safari in a third world country.  What if people hated it?  What if people hated me?  Because, as we all know, speaking up and putting myself out there just wasn’t anywhere near my comfort level. Finally just biting the bullet, I hit send on the email and soon watched my words come to life in front of a readership of over 20,000 subscribers.  It was surreal and euphoric and any other ethereal adjective you could possibly come up with.  The responses kept pouring in thanking me for ‘saying what they felt but could never express’ and the impact it had on my confidence level almost knocked me off my feet .  I craved that feeling, so article after article came pouring out of me and before I knew it, I was a regular guest writer.  Then I met the Spoon Lady (Christine) in person, talked to her on the phone regularly and found myself as a staff writer.  More trust was established and recently I have been upgraded to editor. Christine and I had become a team…speaking up for those who feel as if their voices are never heard and have been beaten down by those same five words that brought me to the place I am today.

So why did I tell you all of this?  Maybe part of it is the aforementioned 16^th anniversary of my 21^st birthday…and the realization of what I’m supposed to do with my life.  Maybe it is Denise’s recent Silent Spoonie article that reminded me that there are people out there who are just like the ‘me of 10 years ago’ and are scared to shed that invisibility cloak of safety.  Maybe it’s because I finally can look in the mirror and like what I see after a lifetime of trying to just blend in.  No, I’m not like everybody else and I never will be.  No one wants to be the one that is sick yet no one would wish it on anyone else, friend or foe.  But this is how the cards have fallen for me and for better or for worse, life can only be what I make of it.

I’m proud to be different and will continue to step out on those ledges and take the steps that scare me.  I try not to look down if I can help it.  But even on that ledge, with the risk of falling, I know I have a safety net of spoons ready to catch me.  I read a quote by Meredith West that simply stated, “If you want to stand out, don’t be different; be outstanding.”

I couldn’t have said it better myself.  Or maybe, I just did.

Article written by staff editor, Stephanie Kennedy.