January 12th, 2018, was a typical day in my world: wake up, go to work, anxiously manage my time, (panic), hail a cab, apply unwarranted pressure on the driver to scale sidewalks, barrel into my rheumatologist’s office like a bat out of hell, get vitals taken, and wait.
Waiting is practically a prerequisite to being a sick person. We wait for test results, for medicine to kick in, for prescriptions to be ready, for someone to help us with whatever we need in a given moment, and as in my case that day: we wait for doctors to grace us with their presence in exam rooms.
And while I waited under the familiar hum of the offensively bright overhead lights, intrigued by the blue accent wall in an otherwise cookie-cutter clinical quarantine, I decided to kick my feet up, since I already felt at home.
I was thinking about my job, about what time I’d be able to get back to my office, and out of the corner of my eye, I saw my shoes, elevated and crossed, one over the other: rose-gold pointy-toe work flats that I was proud to have found for $18 on Amazon, and it occurred to me: waiting is not the only thing sick people do.
Sick people have careers. Sick people get manicures. Sick people volunteer. Sick people walk their dogs. Sick people dance around the kitchen while making dinner. Sick people go to school. Sick people play music. Sick people clean. Sick people get married and sick people have kids. Sick people travel. Sick people participate in sports. Sick people go to the movies. Sick people read books. Sick people WRITE books. Sick people overcome whatever they need to. I am sick people.
I am a sick person doing things.
As I’ve talked about in length on my Instagram account, it’s truly bizarre for me to see how members of the chronically ill community behave once they are introduced to social media. When I was a kid (it’s official, save me a seat at the buffet, I’ll bring my senior citizen discount…), electronic devices were more-or-less used for the shit they were intended for. A phone’s purpose was to call people, computers were for typing up documents, and televisions aired 25 episodes of a program that was properly spaced out throughout a season, which went from early September all the way through the end of May.
With the undeniable growth of technology, we’ve gained a lot in the way of efficiency and access. But we’ve lost much of what makes living on this planet important and tolerable: the value of hard work, human interaction, and being able to communicate effectively, altogether.
So it really shouldn’t be surprising to me that when I hop online and I view content procured by the “chronically ill”, I’m met with a narrative that grossly misrepresents that which defines me.
Generally speaking, chronically ill people aren’t whiny. We aren’t passive-aggressive or malicious. We aren’t hyperbolic when we report symptoms, and actually, we tend to minimize and hide what we have going on, just to avoid being a burden. We are tough, and resilient, and we have goals that we’ll meet or die trying to meet. We don’t make excuses, but we also don’t glamorize what being sick is really like by overcompensating with warrior poses. We are a healthy balance of grace and assertion; we know how to appreciate what we have because we’ve had less, and we know how to speak up because we’ve been played-down.
We can handle our own.
Moments of vulnerability are few and far between, because we cannot allow ourselves to be perceived as weak or incapable. We’ve been ignored, or worse, disregarded, even when our full picture is “understood.” We don’t want to jeopardize our care, so we’ll stifle tough emotions so we don’t get labeled as difficult.
#sickpeopledoingthings is about highlighting the parts of our existence that don’t directly correspond with our illness – not in a shameful way, but in a way that helps people become clear about the fact that we matter, and we are a force to be reckoned with.
#sickpeopledoingthings represents the dichotomy of a circumstance we can’t control: that while we are going through the motions of an everyday existence on the outside, we are also superheroes who lead a double life. We are managing pain, coordinating our medical care, and mentally processing an extra layer of heavy shit that those without illness don’t have to consider. Except we aren’t Clark Kent in one place and Superman in another – we. are. both. all. the. time. We don’t get to choose when we want to be one or the other. It’s the thing that makes us suffer, but more importantly… it’s the thing that makes us strong.
#sickpeopledoingthings is about the beauty that comes from those around us not needing to know of our dual identity. Offering others a medical play-by-play doesn’t make our illnesses more real, and people not believing we are sick doesn’t make them less real. If anyone has a problem with that, that’s THEIR shit, that’s not OUR shit.
We are not to waste time proving anything. To anyone. Ever.
#sickpeopledingthings was created so we can start feeling motivated and empowered to live the lives we want to live. That doesn’t mean that we’ll do it the way it’s commonly done, and it doesn’t mean we won’t have to make modifications along the way. What it does mean, however, is that our victories will come from pushing past our illness, and not losing who we are in the process of dwelling on it.
A lot of people think that being inspirational happens when you simply intend to inspire, but that’s not even close. There’s nothing special about preaching to the choir. People are most inspired when they see others doing things that bring them joy, and doing it in the face of adversity. No one wants to hear us talking about the things we want to do, they want us to see us get up and do the things we want to do. They want to see that there’s hope for them in us.
#sickpeopledoingthings is not about posting about another visit to the clinic, or another blood draw, or another sob story about how being sick is holding us back. It’s also not about warrior poses and invasive awareness raising and all of the ridiculous self-indulgent and misguided behavior that has infiltrated the internet. It’s about absolutely none of that, while being something in between.
We need to stop trying to inspire, and start being inspirational.
Go outside. Write in a journal. Make time for the people you love. Work hard. Earn the things you have. Explore your passions. Experience new things. Protect the things you’re grateful for. Find joy in little moments. Help others.
In the last 9 months, #sickpeopledoingthings has been used more than 1000 times, which means we now have an active record of the things we CAN do, not the things we can’t. Instead of freaking out the newly-diagnosed with over-the-top memes and selfies that scare them into being bedridden shut-ins, let’s use #sickpeopledoingthings as a roadmap of options to the dream(s) of their choosing.
Get that virtual degree. Start that business from your bed. Organize your closet when you can’t sleep at night. Rent a scooter on vacation. Start dictating that first novel. Get comfy with online shopping.
Chronic illness shouldn’t prevent you from thinking that your life matters or that it will amount to anything important. If you want to be more than your illness, take the steps necessary to say that proudly. If you want something bad enough, figure out a way to make it work for YOU. Be a sick person doing things.
Everybody has shit. This just happens to be ours.
#sickpeopledoingthings est. 1/12/2018 by Becky aka @chronicmotivation