Dear Disabled and Chronically Ill People: It's OK to Complain Sometimes

Emma!  Back again?”  One nurse exclaims to me as I’m rolled down the hallway in a hospital bed, transported to have a CT scan.

“Yeah, unfortunately.”  Though I said it with a laugh under my breath, internally, I felt numb.  This was my third stay in roughly three months or, more specifically, my second admission in less than two weeks — with this most recent stay totaling nine days.  Most of the nursing staff know me by my first name and vice versa.  Some of them talk about the “positivity” in my room as I chat with them about shows they’re binging or what brought them into healthcare, and earlier in the day, another staff member unexpectedly walked into my room.

“Do you remember me from South 6 ICU?” he asked, referring to a life-threatening event from February of last year.  I confirmed that in fact, I did, as blurry as many of those days were. Eventually, not realizing how numb I was and as if on autopilot from dissociation, the aforementioned nurses’ aide changed the subject and we started making small talk about the best Marvel movies and what was new in our lives since we last saw one another as he fed me my lunch — one of the first meals I had eaten in four days.

It wasn’t until later in the evening, when I was alone in my small hospital room listening to deafening silence and the sound of my own thoughts that not even the sounds of beep beep beep could fill, I thought about a lot of things.  My stream of consciousness was jumbled and basically went something like this, repeating like a broken record for several minutes:

How do I feel about this?

How should I feel about this?

Oh God, am I complaining?

Buck up and deal with it.

Oh my God, what if this keeps getting worse? Why do I feel so… trapped?  

I’m sure that we’re all familiar with a buzz phrase that has been going around recently that describes this exact feeling: toxic positivity.  Jokingly, I think disabled and chronically ill people got the heaviest burden of toxic positivity before it was cool.  Speaking for myself, when I’m in situations like this, I’m often complimented for my positivity and “never complaining;” words that I have heard since I was a child who from a young age found my second home in the hospital. Although intended as a compliment,  eventually those words became internalized, and over time, they taught me to numb myself.  As a child, I learned that not showing emotion and being compliant with therapy, surgeries, and hospital stays at all times was equivalent to being “good.”  Even as an adult, I struggle with letting myself break it and it’s something I’m working to unlearn.

Because of this, the next day, once again alone with my thoughts, I decided to change the narrative.  My thoughts shifted, this time to something that almost felt a little bit wrong and that went against everything I’d ever been taught.

You have been through hell, and you deserve to complain every once in a while.

You deserve to feel real human emotion, because this shit is HARD.

In that moment, I let myself feel sad, scared, and dare I say it, a little bit angry.  Instead of only feeling forced happiness that was in part taught to me by how sick people are represented by society — a portrayal that’s unfortunately limited, and prevalent especially in media, such as hospital PSAs of sick but smiling children — I slowly started to feel again, as hard and wrong as it felt.

Do I try to be as positive as I can?  Of course, and to a degree, I’d like to think it rubs off on people.  If I were sad and depressed every second of every day due to my many illnesses and conditions, that would be a miserable existence.  But denying my reality as a disabled and chronically ill person is exhausting, and you shouldn’t do it either. Just like everyone else, we’re human, too.  I would love to see the day when all of us, especially sick people, can stop being positive, and start being the beautiful, complex humans that we are — our messiest emotions included.