After a recent doctor's appointment ...
Invisible
Invisible
I have often heard Lupus referred to as an "invisible illness." People call it that because you cannot see its wreckage just by looking at a person. For some, there are outward markers—the tell-tale malar rash—but even those do not begin to scratch the surface of what Lupus does to a life.
That isn't the "invisible" on my mind today. There are deeper layers to this —aspects that feel like more than just an "invisible" disease. I feel like an invisible person.
How often have you felt your own voice fade as you sit before a doctor, trying to find words for the inexplicable? How many of us have felt ourselves turn transparent even in the eyes of friends and family?
The Chart
I am not a person sitting in front of you. I am a chart. I am a stack of papers to be flipped through; a series of numbers and cold text scrolling across a computer screen.
During my last visit, I watched your frustration flicker across your face. You stared at the screen. I was right there, sitting in the chair, but you didn't see me. You saw your numbers. I don't think you ever made eye contact.
"Okay, I'll see you in three months," you said.
But, hold on. You didn't see me today.
Invisible.
You didn’t see the desperate hope hanging in the air. You didn’t see that hope snap and crumble when I saw the irritation on your face. If you are irritated or frustrated — guess what? You get to walk out the door. You are finished with your frustrating moment. You simply move on to the next chart in the stack. I don't get that freedom to walk away from this. I am living with it every single second of the day, and I came here today hoping for help.
Invisible.
I walk out the door and break down into tears on the drive home. I go back to a life defined by pain, confusion, and a steady, agonizing loss of independence. You leave the room and leave the frustration behind. I cannot leave this.
Now, I am left wondering: How do I continue to live like this, day after day? With no answers. With no help. And after seeing that look in your eyes — with no hope for change.
Invisible.
What the data misses
What your chart doesn't show
Is everything you actually need to know. To actually hear.
If it was you, how would you feel?
If it was someone you loved, would you listen to what they needed to say?
It doesn't show the nights spent crying as the pain wraps itself around me, threading through my joints, muscles, and nerves. It doesn't show me curled up alone with a Ziploc bag of ice, begging God to ease the pain - for a moment’s peace. I fall asleep with tears drying on my cheeks and my brow still knitted in a grimace — not because the pain has subsided, but because I am simply too exhausted and spent. I wake ten minutes later, or thirty. Sometimes mercifully "wonderful" nights, I might get a few solid hours uninterrupted.
The nights I sleep a full night through are ghosts now. They are rare and forgotten.
Every day is spent mostly in solitude. The pain and the mind-numbing, consuming fatigue keep me from a life that even resembles "living." The exhaustion is so total that I struggle to even pay attention when I finally find myself in the company of others.
Invisible.
What your chart doesn't tell you: I have given up on the idea of a doctor actually helping me.
I have retreated into a world of "coping." I choose my companions from a screen or a page — my phone, my laptop, a book, a show—while I wait out the hours. Even a bath is a marathon. I have to lie on the bed to recover in the space between washing and getting dressed. I have help to pick out my clothes and brush my hair. I am profoundly thankful for that help — but it shouldn't be this way.
Invisible.
I hurt. This pain is real. But, the pain isn't even the worst part of this battle. It’s the "sick exhaustion" that settles into my muscles, my bones, my very mind. It steals pieces of my life that I cannot begin to explain to someone who hasn't stood where I stand.
Invisible.
Data on a screen.
Numbers on a hard drive.
The visit ends. The chart is returned to the stack with a multitude of others.
I return home.
Silent.
What changed today?
You turned your back.
You went on with your day.
I lost hope.
Invisible.
How many, or maybe I should ask how often, have you felt invisible as you sit in front of a doctor and try to explain what is happening to you? How many have felt invisible even to their friends and family?
I have often heard Lupus referred to as an "invisible illness." People call it that because you cannot see its wreckage just by looking at a person. For some, there are outward markers—the tell-tale malar rash—but even those do not begin to scratch the surface of what Lupus does to a life.
That isn't the "invisible" on my mind today. There are deeper layers to this —aspects that feel like more than just an "invisible" disease. I feel like an invisible person.
How often have you felt your own voice fade as you sit before a doctor, trying to find words for the inexplicable? How many of us have felt ourselves turn transparent even in the eyes of friends and family?
The Chart
I am not a person sitting in front of you. I am a chart. I am a stack of papers to be flipped through; a series of numbers and cold text scrolling across a computer screen.
During my last visit, I watched your frustration flicker across your face. You stared at the screen. I was right there, sitting in the chair, but you didn't see me. You saw your numbers. I don't think you ever made eye contact.
"Okay, I'll see you in three months," you said.
But, hold on. You didn't see me today.
Invisible.
You didn’t see the desperate hope hanging in the air. You didn’t see that hope snap and crumble when I saw the irritation on your face. If you are irritated or frustrated — guess what? You get to walk out the door. You are finished with your frustrating moment. You simply move on to the next chart in the stack. I don't get that freedom to walk away from this. I am living with it every single second of the day, and I came here today hoping for help.
Invisible.
I walk out the door and break down into tears on the drive home. I go back to a life defined by pain, confusion, and a steady, agonizing loss of independence. You leave the room and leave the frustration behind. I cannot leave this.
Now, I am left wondering: How do I continue to live like this, day after day? With no answers. With no help. And after seeing that look in your eyes — with no hope for change.
Invisible.
What the data misses
What your chart doesn't show
Is everything you actually need to know. To actually hear.
If it was you, how would you feel?
If it was someone you loved, would you listen to what they needed to say?
It doesn't show the nights spent crying as the pain wraps itself around me, threading through my joints, muscles, and nerves. It doesn't show me curled up alone with a Ziploc bag of ice, begging God to ease the pain - for a moment’s peace. I fall asleep with tears drying on my cheeks and my brow still knitted in a grimace — not because the pain has subsided, but because I am simply too exhausted and spent. I wake ten minutes later, or thirty. Sometimes mercifully "wonderful" nights, I might get a few solid hours uninterrupted.
The nights I sleep a full night through are ghosts now. They are rare and forgotten.
Every day is spent mostly in solitude. The pain and the mind-numbing, consuming fatigue keep me from a life that even resembles "living." The exhaustion is so total that I struggle to even pay attention when I finally find myself in the company of others.
Invisible.
What your chart doesn't tell you: I have given up on the idea of a doctor actually helping me.
I have retreated into a world of "coping." I choose my companions from a screen or a page — my phone, my laptop, a book, a show—while I wait out the hours. Even a bath is a marathon. I have to lie on the bed to recover in the space between washing and getting dressed. I have help to pick out my clothes and brush my hair. I am profoundly thankful for that help — but it shouldn't be this way.
Invisible.
I hurt. This pain is real. But, the pain isn't even the worst part of this battle. It’s the "sick exhaustion" that settles into my muscles, my bones, my very mind. It steals pieces of my life that I cannot begin to explain to someone who hasn't stood where I stand.
Invisible.
Data on a screen.
Numbers on a hard drive.
The visit ends. The chart is returned to the stack with a multitude of others.
I return home.
Silent.
What changed today?
You turned your back.
You went on with your day.
I lost hope.
Invisible.
How many, or maybe I should ask how often, have you felt invisible as you sit in front of a doctor and try to explain what is happening to you? How many have felt invisible even to their friends and family?
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