What do you do? I’ve spent most of my life trying to be invisible. I’ve lost track of the number of times I’ve wished I could melt into the background completely unnoticed. There have been occasional longings for someone to rescue me from the deafening invisibility, but largely I feel naked without this blanket of security.
Now I’m experiencing invisibility in a new light.
I’m drowning in it.
And I’m finding that I don’t know how to swim in it.
I don’t see anything wrong with you… People look at me and see a fully functioning individual with nothing outwardly wrong. If they look closely enough they might notice the ever-growing bags beneath my eyes. But looking long and hard at me won’t reveal the agony of over a month of not sleeping well. They can’t see how the cogs within my mind become disengaged from one another for days at a time, preventing me from performing my best at school, from speaking in a coherent manner with my boss at work, from reading a book with ease.
You look so perky! There are some things that they could potentially see. The muscle fatigue that overcomes me as I climb two sets of stairs, the thing that has temporarily robbed me of my ability to run handfuls of miles each weekend, they could see that. The exhaustion that slams my body and mind like a rip current each day, they could see that. The violent mood swings that cause tears without reason, fury without warrant… they could see that. They could even see that I shed and add layers of clothing based on my body’s inability to tolerate varying temperatures. But they don’t see it. Because I don’t let them.
With an invisible illness, you fake it ‘til you make it. Or break.
What are you up to today? I make coffee every morning now. I have never had to rely on caffeine before this mess began, which is something I was very proud of. Now I have modified my caffeine intake to help me balance the exhaustion so that I can at least make it home before I’m too fatigued to do anything. I make my way to school or clinical, more often than not feeling overwhelmed and over stimulated by the bright taillights and headlights of the morning traffic. I take each class in half—make it through the first, brain break, second half, another brain break. I try to focus in class, but not become emotional when I can’t remember something the professor said that I want to put in my notes. Depending on the day, I go to work—where I try my hardest to work as fast as I can to maintain a sudo-normal speed—or I go home. Once I’m home, I melt in the shower and let my mind go; a short reprieve before I ask too much of it again. Then the clock is really ticking. Depending on the quality of my sleep, I may be able to work on homework for a decent chunk of time, other times it’s a dismal and embarrassing amount. I’ve texted my instructor in shame several times this term, asking for an extension and explaining that I simply have to go to bed. It’s a good day if I haven’t cried or unnecessarily lashed out at anyone. These days are rare. The alarm is set, and the dice are tossed: what quality of sleep will I get tonight?
How are you? I’ve grown to dread the conversational question because I don’t want to lie, but I don’t want to be honest, either. I don’t want to tell them how I am. I don’t have the energy to tell them how I’m doing, because they don’t know what I’m going through. They don’t understand that my bad night of sleep is not comparable to their bad night of sleep. They brush off my embarrassed and humbling admission of, “I cannot think about this right now,” as nothing more than laziness or a desire to not talk about something. And that’s frustrating. More frustrating than it should be because I can’t control my emotions.
How are you? I’m crumbling. I’ve shut out most people in my life. My parents don’t know what I’m experiencing. I’ve cut off all but one of my closest friends. With the exception of this friend, the only other people who have a glimpse of what I’m dealing with daily are my professors, my advisor, and my classmate who also lives with invisible illnesses.
How are you? I don’t know who “I” am, right now. I am someone who’s very open and who takes pride in the fact that I’m comfortable enough to share my true self with the world. But that “I” is gone. She’s withdrawn; barricaded deep within, safe behind the storm doors and locked in. “I” don’t know this person. This person whose eyes well with tears over senseless things. This person who nearly snapped at a school secretary. This person whose walls are built so high, this person who worked tirelessly to add layer after layer of brick to protect herself once she saw that outside understanding was not easily found.
You can’t think? Oh, that’s like my Monday! I know how you feel. I have worked my ass off to get where I am today. I have poured countless hours of my life into my studies, into learning material that could save someone’s life and to avoid costing someone their life. When the quarter started, I thought it was weird that I was reading my books slower than normal, but I didn’t give it much thought beyond that. Once I started finding myself spending days trying to learn the same material over and over without success, I knew there was something wrong. To stare at my textbook and find that not a single word makes sense is an incredibly humbling experience. To read an email for work and find that I’ve reached the end of the email but have no idea what it was about is horrifying. To listen to someone provide instructions and have to ask them to repeat it again and again, or ask them to explain the meanings of simple words or phrases they used? That’s mortifying. To be so exhausted and fatigued at 2pm every day, to the point that I’m ready for a full night of sleep? That’s not just a Monday. That’s my every day now. And it terrifies me.
Well, what’s wrong with you? To “operate” in this manner for a month or more without knowing what’s causing this conglomeration of hellaciousness is aggravating, to say the least. I’ve carried around my little notebook all week jotting down symptoms and questions as I think of them, not trusting my brain to think of this crucial information. My only lead was shattered today. My primary care provider and I suspected my thyroid as the culprit of these symptoms, but the endocrinologist today informed me that my thyroid is not to blame. I spent the entire drive home wondering if I’m crazy. I brainstormed different mental health diagnoses to research to see if any fit. I’m back at square one with one less possibility and a greater amount of frustration.
Can I help you? I’ve withdrawn. I do not trust myself to make any big decisions or say anything that could potentially hurt or change somebody, because this emotional wreck I have become is not me. I’ve told people that I can’t put my energy into anything besides school. There’s so much truth in this statement; I truly don’t have enough energy right now to complete all of my schoolwork, so there’s no way that I can handle any return drama. But in this statement that I have repeated so many times is another bit of silent information: “I’m building a wall and I’m placing you outside of it. I’ll pass you information when I feel like I can trust you with it or when I don’t feel inexplicably and unreasonably angry at you.”
Until I can finally learn to swim, I’ll try to stay afloat on the small bits of flotation that are given to me by those I’ve trusted with part of this burden. They are my Coast Guard, they are the reason I keep treading water. They are the reason I haven’t drowned yet.