How are you?
By Leah Oren
“Hi. How are you?”
“I’m good. How are you?”
It’s a fairly innocuous exchange, one we have all participated in at one point or another. An identical interaction you probably have several times a day, with everyone from your next door neighbor to your teacher to the cashier at the grocery store.
Most people know that it went from being a well-meaning question, one where the speaker actually cared about the answer, to an alternate greeting, another form of “hello” that is just spoken in passing without waiting for a response. It’s become a pleasantry, a courtesy, more than a query of one’s health.
However, to someone suffering from a chronic illness, it can mean something else entirely.
I personally hate this question. “How are you?” has come to have a whole new interpretation for me since becoming sick. It doesn’t feel like just a greeting. Not anymore.
Now, whether intentional or not, this question has another, unspoken question hidden behind it, one the world of the healthy doesn’t see or consider. Because when someone says, “How are you?”, what I hear is, “Are you still sick?”
And every time it is asked, it’s just another reminder that I am.
***
“Hi. How are you?”
“Pretty shitty, actually. How about yourself?”
As a spoonie, this is often the answer I want to give. However, I rarely ever do.
The answer I do give varies. Sometimes it’s “fine”. Other times the answer is “alright”. I’ve been known to respond using “okay” too. It doesn’t so much matter the adjective I do use, as much as the one I never will: “good” .
Just four letters, but you will never hear them slip off my tongue. At least, not in the context of describing my life or how I’m feeling.
There are several reasons why I’ve made this conscious choice:
1. I’m Not Good
The first reason is pure honesty on my part. I’m not good. I can’t remember the last time I was good or had a good day, full stop. Not a good day for someone with a chronic illness. Not a good day for someone whose body is waging a war against itself. Just a plain good day, one where I didn’t take the time to acknowledge that it was good because the day before it had been and the one after it would be too.
If I had to pinpoint my last good day, it would probably be September 5, 2015. It was the day I moved into my college dorm and the future still looked shiny and bright. Back then, I didn’t know the pain the future held. When I woke up in the morning, I didn’t have to think about what the day would bring and when I passed my new classmates in the hallways and they asked, “How are you?”, I could honestly answer, “Good,” without having to think if it was actually true, because it just was.
Each day was inherently “good”.
Now, this couldn’t be further from the truth. I begin every day expecting the worse. From the moment I open my eyes and leave the sweet world of dreams, I wait for the symptoms I escaped for eight hours overnight to return.
I don’t live life expecting good, but expecting bad.
And while it’s not a big deal to lie to to others, to tell a little fib to the friend from high school I run into at the mall or spin a little white lie when picking up an order at the pharmacy, I do know that, personally, lying to myself does not help. I refuse to do it. Being honest with myself is the healthiest thing for me. The age old adage “fake it till you make it” has never worked for me because my body doesn’t let me ignore the facts. I’m always keenly aware of the truth.
And the truth is, I’m not good. So I won’t pretend to be.
2. Fear of Tempting Fate
I’m a superstitious person. I cross my fingers and knock on wood. I believe in karma and I question if walking under a ladder in fifth grade was the source of all my troubles later in life. I never want to say anything out loud, for fear that doing so may cause it all to unravel.
This is another reason you will never hear me utter the word, “good”. For fear that doing so may jinx it.
It may seem silly or downright stupid. But, to me, it’s a very real possibility. Because that’s what happened 23 months ago when I told my mom I was the happiest I had ever been, only to watch as it all crumbled to the ground and my health fell to pieces. Like somehow the universe heard me and decided it had to prove me wrong.
I’m afraid by acknowledging a positive, I’m inviting something negative to befall me.
In the moments where I slip and do use the word “good” to describe my day, it feels as though I’ve stepped on a crack or opened an umbrella indoors. It’s almost as if I expect lightning to strike me down any minute. Like I’m tempting fate.
And, given my current situation, that’s just not a chance I can take.
3. Good is a Relative Term
I think it’s possible to have “good” sick days. By this, I mean days where you’re able to get out of bed, have enough spoons to take a shower, or maybe even the energy to leave the house for something that isn’t a doctor’s appointment. I’ve had these and as difficult as it can be to acknowledge them in the midst of all the crappy days, and as painful as it is for me when that silver lining of a day is gone, I try to recognize them. Compared to the days where you can barely sit upright or keep your eyes open for more than twenty minutes at a time, it shouldn’t be difficult to notice the “good” days when they do come along.
However, while I can feel the difference of the “good” days, I have a difficult time labeling them as such. Because I don’t just compare one sick day to another to determine where it falls on the scale. No, I can’t help, but to compare my sick days to my healthy ones. Even though they are long gone and not returning anytime soon, I can’t help but to remember the days when I could go, go, go from morning till night and didn’t have to pace my body and when going out with friends one day didn’t mean being stuck in bed all day the next.
And so, compared to the life I used to live, compared to the good days I used to have, these “good” days really don’t feel so good.
4. It’s an Unnecessary Cover-up
This fourth reason, I think, is the most important. As many spoonies know, living with a chronic illness is hard. Not just because of the symptoms you have to deal with or the, by definition, lifelong pain, but because you are forced to face the thoughts of family, friends, and even strangers who have an opinion about your illness. Or, perhaps worse, don’t believe you are sick because they can’t see proof of your disease, your symptoms unseen to the naked eye.
It’s why it’s called an invisible illness.
I’m constantly frustrated by this fact. That my disease can go overlooked and unnoticed and so many make assumptions based on my appearance. I’m not given the chance to be honest about my illness.
Unfortunately, there’s not much I can do when it comes to physically making my illness recognizable. But I can decide that I won’t add to the coverup.
What I’ve realized is that by answering “good” when, in fact, I’m not, by covering up how I’m feeling, I’m only adding to the invisibility of my illness, allowing it to continue being swept under the rug.
I can’t change the fact that my illness is invisible. I can’t choose to make my symptoms visible. But I can decide to be honest about my health. When asked, “How are you?”, it is my opening, my opportunity to shed some light on the experience of a chronic illness patient, even momentarily.
It’s a chance I won’t pass up.
***
My aversion to the word “good” is a personal one. I have made the intentional choice to avoid it for the reasons listed above. But not all spoonies are the same. I don’t pretend to speak for us all.
So, I’m asking all you chronic illness warriors out there, what do you think? How do you feel about the word “good”?