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The Day I Finally Received My Lupus Diagnosis

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I feel a wave of goosebumps envelop my skin one follicle at a time as I sit on a park bench in the middle of October. Leaves are orange, red and absolutely beautiful, softly crunching beneath my sneakers. I really like these sneakers – they are classic white canvas with K-Swiss imprinted on the rubber sole. My feet appear disproportionate to my legs because of how much weight I have lost. I suddenly feel overwhelmingly grateful to be able to choose what sneakers I wanted to wear that day. Not all of my days allow me to choose what shoes I want to wear or the clothes I put on my body. The air is chilly but the sun is warm. I gently swing my legs back and forth as I sit on the bench, people-watching. I like to find quiet spots to sit with my thoughts and reflect.

I observe the way people run around, always in a hurry to get somewhere or prove themselves to someone. Meanwhile, they’re taking for granted their ability to choose their careers, have the possibility of an unlimited future and mold their lives into something worthwhile. Those are always the concepts that should be available to everyone. But they’re not.

This coffee is delicious. Starbucks really does brew the best Caramel Macchiato – I don’t care what the anti-trend crowd says. That first sip of sweet caramel followed by the bitter and addictive taste of espresso and milk makes my cloudy mind peak its metaphorical sun. It’s funny how something as simple as a cup of coffee can make my day not seem so gloomy.

Whenever I look up at the sky, I see peace from the chaotic and self-absorbed world that we live in today. It’s like looking at a goal I can’t seem to touch or grab. I suppose it is similar to the idea of happiness: there is no one picture of happiness, nor is it something you can tally or gather in a box. It’s a feeling of complete contentment, a rush of warmth running through your veins with small sparks that trigger smiles. I would say I am happy, just a little sad behind my joyful dry eyes.

It’s been a long four years; no one should have to struggle as much as I have at such a young age. When you are 17 you are supposed to be naïve and full of energy, not worrying about doctor appointments, blood tests, MRIs or, most of all, whether or not staying in college is the right choice for you at the moment, when the rest of the world is encouraging you to quit and move home. It’s upsetting to even think about the lack of faith those closest to me have shown, the friends I’ve lost and the opportunities I have had to miss out on because of something I have zero control over.

There’s my phone alert – text message. Who is it? Just my mother; she wants to know the time of my appointment. I’ll text her back later. She is the only person in my life who actually asks how appointments went or how I’m feeling. It’s unfortunate every answer is confronted with more questions and unwanted advice about a topic she knows nothing about. Hell, most doctors don’t fully understand what is going on with my body.

That trail looks pretty. I think I have some time to take a walk before I need to sign in. It’s always difficult getting up when it’s cold outside. I actually have a handicap sticker even though I know I am stereotyped every time I get out of my car. It’s a shame some people even notice me. I like to think it is anger that drives their judgment and inability to look within themselves. If they really knew me, they would love me, maybe even find me inspiring. But they do not.

I think that is my one goal in life. I want to be remembered as someone who inspired others even on the smallest level. I never feel sorry for myself or ask, “Why me?” I find that to be pointless and I don’t feel sorry for my situation. I feel sad, but I do not feel like I am being punished or challenged. This life isn’t a challenge from the Great Beyond. Things are the way they are because I was born with a genetic condition. It isn’t any one person’s fault; the key is finding people who are willing to open their hearts to everything that comes with your package. I try to take every experience and event and add it to my philosophical charm bracelet. Little do they know, mine comes with confetti and glitter!

After college I realized how many friends I had lost because they didn’t have the ability to accept a person like myself. It requires understanding and patience, an ability to appreciate the simple things. As I’ve gotten older I have realized how I have a friend for each event in my life. I have a best friend who I can go to for anything; however, I also have a friend for a wild night out, a friend for a movie and dinner, a friend for when I am happy, a friend for moments when I need a reality check and a friend who will do nothing but listen and reassure me that I am worth everything good in this world. It is impossible to find every quality in one single person.

I always worry about annoying people, bothering others with the world’s tiniest violin playing in the background. It gets really lonely sometimes. But I know I am happy with who I am and what I stand for at every moment. I am realizing that who I am and my life as a young 21-year-old is about to change forever. I can feel it in my aching bones. These appointments never get easier. My nose is getting stuffy – where did I put my trusty wad of tissues?

Alright, it is 15 minutes until my appointment time. I suppose I should walk inside. Telling and retelling my medical sob story is cringe-worthy. I can always see the doctor’s eyes glaze over as I continue to give them details on my developments. And my list of medications? Forget it! The nurses always have to ask me how to spell half of them because they were last used 50 years ago for diseases that no longer exist. I hope this doctor is accepting and can give me an answer with a path to health.

These doors are heavy; my fingers feel like I have shards of glass as they bend to grasp the handle. I despise walking into doctors’ offices for the first time. I never know what to expect. Will there be a lot of people staring at me as I limp inside, wondering, “What’s wrong with that girl? She doesn’t need to be here!” And to that I say, “Ha! You have no idea… ma’am.” See how I did that? Trying to be respectful even within my silent thoughts.

Well, it’s a tiny waiting room with six chairs, and only one girl who is my age is waiting to be seen. Young people, unite! I get really clever when I am nervous. Charming, I know. This paperwork is insane, you would think my transfer of four years of blood work and imaging would be enough. I should have gotten here 30 minutes early – what was I thinking?

To be honest, having to check every “symptom” box is a real reality check. Who else can say that at 21 years young they have joint pain, facial rash, muscle pain, fatigue, abnormal blood work, purple fingers, lung pain, GERD, brain fog, memory problems, GI pain and neurological deficits, sleeps 14 hours a night and still made it through college in four years? This girl right here! I feel a small smile coming on.

Time to go back and wait for my fate. Steady breathing…everything will be alright. It is what it is… How many more cliches can I come up with? I always wonder if people realize the mound of garbage that is attached to cliches such as those. At least follow it up with a few specifics so I feel like you care.

How has it only been five minutes? The civilian world has sucked up a majority of my youth by making me wait. I wait for blood work to come back, I wait to see the doctor, I wait for voicemails to be returned, I wait to see another specialist, I wait to see if a new medication works, I wait to see if friends will stick around and I wait to see how I feel tomorrow. It is safe to say my butt is pretty numb from all of the waiting.

“Hi Emily, nice to meet you! I’m Dr. Jones. How are you?”

“I’m OK I guess…”

“So I saw your files and you have quite the history, huh?”

This is where I always give a small smile and inappropriately giggle. I begin sharing my story. I thought her eyes would glaze over after about two minutes, but she’s smiling and… did she just say something?

“You have lupus and Crohn’s disease.”

I’m sorry, I what? Was that a diagnosis?

I can feel myself tearing up, I need to breathe and control myself. I’ve waited so long for someone to give me a name to my pain and silent struggle. It’s finally happened. Why do I feel so numb? OK, she just left to get my scripts and some injection she is starting me on today. This is happening really fast. I’m excited but nervous. Someone finally studied my blood work, considered my symptoms and listened to me.

I need to get to the bathroom – I’m going to start bawling. My heart is racing and my throat feels like a giant square knot was tied then shoved down my throat.

Release the flood gates! I feel like my heart is going to explode. My entire world has been turned upside down. I thought there were only two sides to a coin. Every appointment I’ve had doesn’t have an emotional impact until it is over and I am upset because I either got new news or I didn’t get anything. I want an answer but I also want to be “normal.” I want to be able to go out all night with my friends and wake up the next morning just needing an aspirin and a cup of coffee, not be stuck in bed for the next 24 hours followed by a week of flare-ups.

I finally have a name, a label, an identity to give the grueling pain and fatigue that has caused me to isolate myself from society. Forever I am stuck with this word. I will never be “lupus-free” or respond normally to intense exercise and certain foods. My hair will never feel healthy and my face will never transition from blotchy red pigment into a silky and luminescent shade of cream with pink specks on my cheeks. It just won’t.

Deep breath in. Deep breath out. Time’s up, keep going.

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Image via Thinkstock.

Originally published: February 1, 2017
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