May 2, 2011

The Lupus Misconception (HAWMC)- Day 10

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Today's Post from the Wego Health (HAWMC) for Day 10 is about sharing secrets. To share with the public a secret or misconception about our illness that we'd like to make known. 

Post Secret. You know the beloved PostSecret blog? Today’s prompt is to write down a secret that …really isn’t a secret. As a Health Activist, you have disclosed in the online space – but perhaps people you interact with and help have not. Additionally, perhaps aspects of your condition remain “secret” to the public. Awareness is our focus today. The catharsis related to sharing something thats been on your heart, perhaps weighing you down, is what makes PostSecret even more powerful.

I'm going to paint a picture and I want you to imagine it with me.

It's seven A.M. and you have been tossing and turning for over eight hours. Luckily you've been reminded to take your morning medication by a repetitive annoying phone alarm. The challenge is making it out of the bed. Cheeks throb red with exertion as you attempt to inch your legs over the side of the bed. Each movement of a joint is a painful struggle. Desperately pushing your limits you extend an elbow, bend a knee, lift your head, steady your back...all in the effort to stand. The room spins. However, you are not done. Dare I attempt to walk? If only I had the magical powers to summon my medication but alas I am not Harry Potter.

Arms wobbling as I aim to take that first step. Un-clenching my mouth...really it's a wonder I've any teeth left at all. Mechanically almost robot-like I make my way to the stairs. My tongue gets dry and suddenly my throat constricts tightening like a boa constrictor. My stomach though empty struggles to crawl it's way out of my mouth and I collapse in my efforts to keep from upchucking my insides. 

I refuse to lose this battle and so I press on. My limp limbs have an entirely different opinion. "I think I can, I think I can" becomes a mantra. Floor bound I slither to the stairs. Inch by bone wrenching inch. Step by step. At this point the pain has become monotonous. It never quite leaves you, curling around each muscle, joint, limb until it is intertwined so deep in your being that and you cannot distinguish what it means to be free of agony. Seconds stretch into minutes which feel like hours, and finally I have found myself in the kitchen.

Grasping the kitchen counter I feel a small wave of panic creep upon me. What was it I came down here for? Am I hungry? A brush of nausea assures me that I am not. Eyes clench in a flurry to provoke an answer. My mind it seems has a forecast of fog, with thick clouds on the horizon. Confusion. Once again seconds stretch into minutes which feel like hours. This forecast of "fog" which replays like a broken record week after week chips away at my sanity. The microwave blinks in annoyance; eighty-thirty. Above it an empty pill bottle with a reminder to call in refills and suddenly I remember. My medication.

My arm groans as it reaches for the bucket with my name on it. Orange bottles, white bottles, green pills, yellow pills. It is Thursday which means I have to take the dreaded chemo-drug. Slowly I struggle to straighten swollen stiff fingers. Inhale. Forehead veins throb, teeth grind, pain grows, tears form, and I am grateful there is no one to witness my weakness. One, two,, eight, nine...until I've reached twelve. This is only my morning dosage. Breakfast is a far stretch of my imagination and I settle for a vanilla Ensure. Medication taken.

I calculate how much energy it will take to make it up the stairs to my bed, and the mental chanting begins, "I think I can, I think I can"...its amazing how seconds stretch into minutes that feel like hours. Pulling my body up with my arms my brain attempts to drown out the silent screams of pain bouncing within its walls. Just a few steps more I say aloud. Fingers touch the sheets. Exhale. The last thing I remember before my mind lost consciousness was, "I made it." Nearby, the bed clock reads: Ten o'clock. 

The next time you see a friend, co-worker, or family member who was diagnosed with a chronic illness. Think before you speak the words, "BUT YOU DON'T LOOK SICK!". A person's appearance is not always an indicator of how they're feeling on the inside, or the ordeal they must overcome each day.

Have consideration for their feelings and the trials and tribulations that they're going through. Ask them if they need help, or need to rest. Contrary to popular belief chronically ill patients do NOT want to lay in bed all day. We MISS the "us" before we became sick, and every rude, snide, and ignorant remark about how we don't look sick stabs a knife in our hearts which are already struggling to live.

I never imagined that being judged by appearance could have a negative impact on someone's life until I was diagnosed with lupus. There are so many misconceptions I want to share about lupus, but this is the one that pains me the most. I chose to reveal this misconception because I am tired of the rude whispers, and ignorant statements. 

Today I attempt to break the stigma surrounding lupus, and many other autoimmune disease. I will raise my voice for every child who was teased at school for having blue toes, a sister who was called lazy because fatigue overwhelmed her, a brother who was classified as fat when steroids was the culprit. No! We are warriors who are struggling to fight a battle against an invisible illness that is occurring within us! So don't you dare stomp on our spirits with hurtful remarks! Have respect for our struggle, our fight, against lupus!

Is there a misconception about your illness that you wish to reveal to the world? Go on and share it.

Stay strong my brave butterflies & iron-willed wolves, together we are strong!

Loving you,
Tiffany xoxo


  1. "... the pain has become monotonous. It never quite leaves you, curling around each muscle, joint, limb until it is intertwined so deep in your being ... and you cannot distinguish what it means to be free of agony. Seconds stretch into minutes which feel like hours, ..."

    exactly. beautifully written.

  2. Thanks Tiffany, for more than just inspiration. Your morning trek to the kitchen sounds like mine. I didn't know where all the pain was coming from - I guess the lupus is becoming more active.

  3. Your story is inspiring and I must agree...alot of people, and I mean alot....say they heard of lupus but alot of people do not realize the daily tasks we have to conquer...all based on how the joints are doing as soon as we awake

  4. I really like how you put that .I have lupus too and it is a really big struggle to get out of bed or when i know i am not feeling good ,but everyone looks at you like ya right. I think people need to really be educated about lupus because each person is different and they deal with having it. So it is no wonder why lupus is so misunderstood. Thank you for reminding us that we are only capable of doing as much as our bodies let us
    Mary T

  5. Tiffany, once again you put into words what so many live... silently, and sometimes hidden with smiles that belie the struggles. How good we look when others see us is a testament to the grace and fortitude and strength it takes to cover-up and go on. You my friend... are one of the good ones :)

  6. Jennifer Crossway-WarnerMay 4, 2011 at 11:48 PM

    Tiffany, all I can say is just descibed my every morning and a lot of times my entire day or days! This is something only my loved ones at home have seen and gone through to understand. I sometimes think it's fortunate others don't have to see that side of me, however when I hear how great I look or you don't look like you're that sick or oh you're better now...that's my favorite one, thats when I wish they only knew what my loved ones and I know! The next wish is that my loved ones didn't have to know!

  7. Thanks for reminding me to be a brave butterfly :)

  8. friend and my sister, the feeling is indescribable when u realise that its not just you are not alone, but that there is someone else who feels the exact same things you do. Beautifully written. Never stop raising ur voice:)


  9. Thank you my loves! You're feedback and heartfelt comments make my writing make sense!

    If you can feel like you're living it with me, then I know I'm expressing myself properly! Stay strong lovies & remember that you are warriors. Don't hesitate to use posts from here or others to help others around us understand how we're feeling! <3

  10. Thank You for making me feel like Im not alone. *Hugs*

  11. That is a great description of a spoonies morning! i shared this because one of the most frustrating parts of this disease is when people dont umderstand y i cant just take a shower and go in the morning. THANKS!

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