Sick Girl: That’s Not My Name, Learning to Defy Labels

Sick Girl Defined

“If we blow on you, you’ll fall over. You have to stop to rest when walking. You don’t eat anything. You’re like the cancer girl, we all have to be super nice to you.”

I laughed, and couldn’t stop. Suddenly, everything made sense. I was sitting across from my friend over “lunch.” Lunch being him eating a pile of brisket and me trying to choke down a small rod of red meat.

“Oh my gosh, you can still make fun of me. It’s totally okay,” I said, rolling my eyes. Playful banter is my love language, and I get frustrated when people don’t banter back.

“Yeah, no,” he said.

This “by chance”conversation gave me an insight into how people view me now. Helpless, innocent, a step away from death’s door. I’m surprised at how many people think I’m dying. My official statement: I’m NOT dying.

Most people, from the moment I started treatment, have treated me differently. Some people who would never talk to me make a point to talk to me. People who used to always talk to me stopped. Mean people got nice. Nice people got mean. No one, however, thought to tell me what they were really thinking.

I have three friends who I can rely on to always tell the truth. One of them is the guy above. These friends ask the hard questions. They can be complete arses, but I love them for it.

Whenever I hang with these friends, I can count on them to say what they’re thinking. There’s no guessing. Often, there are rapid-fire questions: “Isn’t there a surgery they can do? How do you keep your faith? What is God teaching you? What does it feel like? You look good today for a sick girl. That’s a firm handshake for a feeble person. Wow, you don’t need a wheelchair today? Is it really that different from day to day? You look like hell.”

Pure truth. Following a question, they’ll lean in intently to absorb every word of my answer. This isn’t how most people act. Like I said, there are few people who are honest all the time. Except for children. Children will point out your zits, wrinkles, and flab. Honest little implings.

Honesty from others provides context for our lives, and how others perceive us.

Sometimes, however, other people’s perceptions aren’t accurate. Somehow, my sickness makes idiotic, incapable of making my own decisions. “Has she been doing any better?” they say, talking to my mother instead of me. Long conversations ensue between my mother and my doctors without them noticing the topic of their conversation is sitting on the cold, pleather table.

Then there’s the list of misdiagnoses. Doctors giving me the wrong label because they didn’t ask the right questions, or listen to my answers.

My current doctors have competing narratives. They all have different theories, they all have diagnoses rotating around my central diagnosis. They all have their labels for me. I’m forced to sort through their many theories like a Robin searching dry ground for a worm. I must choose which treatment plans look right, and which don’t fit. In the same way, I must choose who I’ll let label my character.

Sick girl. Tall girl. Dying girl. Seizure girl. Malingering girl. Faker. Strong girl. Brave woman. Unstable girl. Smart. Stupid patient. Stubborn. Weak girl. Skinny lady. Patient Salisbury. Ill-equipped. Wheelchair girl. Complex patient. Ignorant fool. Disabled student. Writing woman. Genius. Godly woman. Satan’s spawn. Insert other here ______.

The world has a plethora of different labels for us all. Good and bad. Some labels inspire courage to face the world, others make us want to hide away from life’s storms. Names and labels have power, but it’s not the labels themselves that hold the power, it’s the labels which we choose to take upon ourselves.

As with many patients who have complex or rare diseases, I endured a myriad of insults from doctors who couldn’t find my diagnosis. My character weathered a serious storm to get to my actual diagnosis. To this day, if a doctor takes the wrong tone with me, I’m more triggered than a dog at a dog whistle.

Doctors are powerful people. Powerful, smart, successful people. I tend to respect powerful, smart, successful people. If said people tell me I’m a moron, I’m prone to thinking I’m a moron. I shut down. Satan gets a hold of my thoughts, telling me I’m an idiot, everyone thinks I’m incapable, I’m a blubbering fool.

A spiral of thoughts after a doctor’s comment can even put me off from writing for a while. “You’re stupid. You don’t have anything valuable to share with people. If you’re not worth Doctor “A’s” time, you’re not worth anyone’s time. You’re such a burden on your family. Who do you think you are? Why do you deserve looking after by family and friends?”

Do any of these thoughts sound familiar? We all have them. Labels people throw at us can lead to serious self-doubt, and what many people refer to as “identity seeking.” Humanity is searching for identity through an endless pile of words, trying to find which descriptors identify each individual.

It was during a break down after a doctor made a certain comment about me that I realized a few things. How many doctors have been right about me so far? Very few. If I had believed the first label a doctor gave me, would I have gotten the right diagnosis? No. Is this case any different? Probably not.

I decided to say “no” to the label. If I had said “yes” I would most likely not be writing this post. I would have let myself be told I’m a moron who has nothing to offer. But how do I really know whether or not I’m a moron? After all, no one can sees himself or herself objectively.

Only one source of labels is consistently accurate. A nametag supplier who gets every tag right. A laminator producing a perfect product. Every. Time.

God is the only authority on who we are. He’s the one who made us. He’s familiar with every piece it took to make our individual persons. Thus, His labels are the only ones worth noting.

His labels for His children are: Loved. Forgiven. Courageous. Worth it. Righteous. Holy. Pure. Redeemed. Hopeful. Peaceful. Joyful. Endowed with Wisdom. Knowledgeable. Creative. And so many other labels He customizes to each of us. Insert other Biblical title here _____.

Sometimes, God’s names for us line up with what others call us. Other times, we’ve never been labeled with the names God gives us. The only way to know which names are accurate, and which are false, is to seek the heart of God. To earnestly ask Him what He thinks, and says. To “find” who we truly are.

The names we choose to take upon ourselves gives fuel to the determination for the entirety of our lives.  If we think we’re strong, we’ll put in extra effort to identify opportunities to show strength. If we believe we’re weak, we’ll shrink away from all opportunities, noting our inferiority and missing opportunities to love and serve those around us. If we think we’re invincible, we’ll jump off a cliff and die. Choose those labels carefully, folks.

I’ve decided to be careful in selecting which labels of this world I’ll listen to. I make my choices by taking a name and consulting God on whether or not it applies. If it does, I’ll stick it in my mind, and on my heart, like a name tag. If it doesn’t, I’ll burn it like my medical records of misdiagnosis.

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