How a chronic illness taught me to slow down (the hard way)

Hi, I’m Valentina, the human behind this edition of Upstairs. I’m a work-from-home copywriter, a ball of anxiety, and an instant fan of any rock song that abuses guitar distortion. I love British comedy TV shows, movies, and podcasts, but I couldn’t do a British accent if my life depended on it. This goes on my list of regrets, alongside killing any house plant in my possession and spilling coffee on literally everything within a two-feet radius.

—“Hi, I’m Valentina, and I’m a workaholic. Today I’m getting my one-week work-free chip” (choir of other burnt-out, vitamin D-deprived workaholics constantly adding stuff to their to-do list)

—“Hiii, Valentiiiina.”

This dialogue may have only happened in my head as I was basking in the sun outside a coffee shop, but the facts are true.

For the first time in eight years, I took one week off work. I mean completely off the work grid. No peeking at emails. No spying on Slack. No documents with unfinished copy open on my laptop.

On a scale from one to crying-at-the-end-of-Titanic, how sad is it that I consider this to be my greatest achievement over the past few years? Wait… before you answer that question, there are three big important equations you need to know:

1. Work + work + more work = escape from reality.

For a tiny ball of anxiety such as myself, writing words for a living has always been my escape. It requires such constant focus that it doesn’t leave any room for overthinking all the other things.

More work = less overthinking.

Therefore…

Problems in your personal life? Work so much that you don’t have one anymore! Don’t feel comfortable at social events? Set deadlines for every Sunday night! Hate being sick and refuse to acknowledge your chronic illness? Book even more work so you can’t take any sick days! Which leads me to…

2. Workaholism + chronic illness = big bad burnouts.

There’s an old romantic song called “Your body is a Wonderland.” Well, when you have Ehlers-Danlos syndrome, the song becomes “Your body is Jurassic Park” and you never know when the T-rex and the velociraptors escape their cages.

You see, Ehlers-Danlos is a genetic condition that tells your body to produce faulty collagen, which just happens to be the “building block” of pretty much every tissue in your body. There is no cure. There is no go-to treatment. And there are no two identical cases of Ehlers-Danlos, so you have no idea how it might evolve.

I can’t speak for everyone, but here’s how my life with EDS looks like on average:

• One morning I’m getting out of bed and jumping in the shower, the next morning I might be rolling out of bed and crawling to the bathroom.
• One day I’m exercising for an hour, the next day, I might be cleaning the kitchen counter and hear the distinctive crack in my wrist that puts in me a brace for a week.
• One evening I’m taking a long walk before sunset, the next evening I might be having such a bad migraine that I can’t stand the tiniest shred of light.

Obviously, when your chronic illness blesses you with horrible flare-ups on a regular basis, what do you do? That’s right—WORK! What, you thought “slow down?” Yeah, here’s the thing with that…

3. Slowing down = going through the same five stages as grief

For someone who finds her escape, her relief, and her self-esteem in work, being forced to slow down is a messy sprint through the same five stages as grief. You may be familiar with these stages, although I wholeheartedly hope you only know them in theory.

I. Denial

“I’m not actually ill. There are so many people out there who are actually ill. I can’t slow down. My client told me this morning that I didn’t look sick at all, so how could I push the deadline to next week?”

This is what I said to myself after 36+ hours of not sleeping due to constant pain and restlessness.

Now, just as an FYI, my client is anything but an A-hole. He was genuinely nice when he told me I don’t look sick. But in my head, what I heard was the voices of all the people who refused to believe I was ill because I didn’t look the part.

Friends, boyfriends, colleagues, bosses, clients, even doctors and nurses—“You’re exaggerating. It’s all in your head. You’re too young to be having these problems.”

All of these things have been told to my face or spoken behind my back ever since I can remember, and I still hear them now, when I’m turning 33. So I started putting in even more effort to keep up with expectations. To keep up with work. To not let friends down. To turn any medical issue that got me in the ER into a “funny story.” To cheer up my family when they were sick with worry about me being sick with whatever was on the menu that week.

Only that inevitably led to…

II. Anger

“F*#K, seriously? Again?!” Every time something wrong happened with my Jurassic Park body, my anger would instantly rear its ugly head.

I remember vividly that, just a few months ago, I got up from my chair slightly too fast and my hip popped out of its place. Just like that. A not-so-classic case of subluxation. I was used to my wrists, my knees, or my neck suddenly deciding to part ways with the rest of the body.

But my hips? Are you kidding me?

I spent an hour bawling my eyes out and punching the kitchen counter. Yes, the physical pain was excruciating. And having to ask my boyfriend to pull on my legs until it “clicked back into place” was emotionally painful, too. But that cry wasn’t fueled by pain. It was a full-blown silent rage cry. One of those breakdowns where you’re so angry with yourself that you won’t even give yourself the permission to whine.

Silent. Rage. Cry.

Guess what this stage leads to? Why yes, it leads to an amplified need to prove to yourself that you’re not a “weakling.”

III. Bargaining

This is the “If-Then” stage. In my case, if sounded like this: “If I exercised more, I’d build more muscle to keep my joints in place, and I wouldn’t have these problems.”

Great in theory, not so great when your genes skipped the class where they taught Proper Muscle Mass Building 101. And yet, I tried. Because I thought that if I tried and I failed, I’d be less sorry than if I hadn’t tried at all. Needless to say, that was dumb.

I exercised hard.

I pushed through all the pain, because no pain, no game—right? I meant that’s the motto of every fit person I’ve ever met. And I kept pushing through the pain until I had to limp out of bed. Until it took me 15 minutes to get into the shower. Until I had to hop down the stairs on “my good leg.” Until I couldn’t move an arm. Did that finally make me slow down and take it easy? You know it didn’t—we’re only on stage 3 out of 5.

So here it comes.

IV. Depression(ish)

Look—I won’t claim that I know what it’s like to suffer from actual depression. I can only describe my experience: the unfortunate marriage between burnout and hopelessness.

After my horrible experience with intensive physical therapy, I had completely lost hope of getting a “functional” body, whatever that means. And that made me let my guard down, which finally allowed the consequences of several burnouts—that I’d been successfully burying in work—to bubble up to the surface.

I quickly turned from a ball of anxiety into a curled ball of tears, insomnia, and endless chronic pain. Ironically, that’s about the same time when my career started booming. I was invited on a very popular podcast, I was getting offers from high-end clients left and right, I was being pitched bigger projects than ever before.

Did I say No to any of these? No. Of course not! Why not work seven days a week, four of which you spend heavily medicated to stop your body from telling you to slow down via unbearable pain? Why not give your neurologist a better scare than The Conjuring when you show up with a headache that screams stroke?

P.S. It wasn’t a stroke. It was just “one of those days,” as I now lovingly call it while I pop a pill, do some neck stretches, take a cold compress out of the freezer and call it a day.

Which finally brings me to…

V. Acceptance

When did this stage happen, you ask? Why it only took about a gazillion years in the making—and it started precisely on September 17^th, 2020.

I had finally taken my first week off work since 2012. It took me five days of doing nothing just to be able to relax and enjoy… well, doing nothing. I was sitting at a table outside a small coffee shop when I realized I wasn’t in pain.

I wasn’t in pain!

Strange, I know. Insane, even. But it turns out, slowing down is great for the body. And even better for the mind. I was 100% convinced that taking time off would somehow make my brain ghost me and leave me barren of ideas.

Who would’ve think that it was just the opposite?

When I started to slow down, I started connecting more dots. Writing better stories. Coming up with fresh ideas. Sure, some of you are going “Duh!” right now.

Let me assure you: I knew about all of the benefits of taking time off, too. I had read articles and books all about them, listened to podcasts about them, watched documentaries about them. In fact, I actively advised my friends and family to take time off, take it easy and slow down.

But me? Nope.

Because I saw my chronic illness as an obstacle, something that would always keep me one step behind everyone else, I didn’t offer myself the same treatment. I thought I had to work more and work harder just to “keep up.”

Today, things are different.

Sure, in the spirit of full transparency, I have to admit that I am writing this on a Friday night at 11 pm. But for the first time in a long time, I’m not writing words down in a .docx out of duty or because I’ve got a deadline to meet. It’s a choice and a pleasure.

Look, change is hard. “Old habits die hard” is a cliché for a reason. But they do die, eventually. It takes a f*#k load of patience and persistence and incredibly tough self-imposed boundaries. But here I am now, beer in hand, ready to relax on the weekend. No work allowed, and I mean it!

So, let me ask you again… on a scale from 1 to crying-at-the-end-of-Titanic, how sad is it that I consider slowing down to be my greatest achievement over the past few years?

Doesn’t sound so sad right now, eh?

Slow down,
—Valentina

Contributors of this story: Valentina Volcinschi wrote this story, Oana Filip edited it, Andrei Ungurianu put it all together, George Olaru designed it, Răzvan Onofrei was in charge with the development.