Chronic Illness Chronicles: Your Work Isn’t Your Worth

It happened again last night. 

While I’d hoped to spend the perfectly lovely party with neighbors and friends who already knew my shameful secret, some well-meaning stranger dropped “the bomb” I’d been fearing and have feared now for 10 years: 

“So, Erin, what do YOU do?” 

Until 2015 I was a career professional with name notoriety. When I picked up the phone, important people answered. My work was easily accessible by a Google search. I even had my own IMDB page.

Until 2015 I had a ready (and quite impressive) answer for the “So, Erin, what do YOU do question?”

But then the illness hit.

Overnight I went from a working woman to a woman whose body wasn’t working. And within a few short weeks of falling ill, it became apparent that working professionally just wasn’t going to work anymore.

At first, I stubbornly clung to the idea that this was only temporary: that I would find the right doctor, the right treatment, say the right words to the right gods and that my life — my beautiful, professional, important, productively measurable, life — would return to status quo. 

Well, friends, we’re 10 years out, and the status is most definitely NOT quo. 

I’m still alive, but I’ve lost that life. And, as the years and doctors and treatments have gone by, one harrowing thing has become increasingly clear: unless one of those gods comes through with a deus ex machina miracle, my previous life status will never be quo again.

That realization is a heartbreak. A heartbreak on top of the heartbreak of losing my health. But it will not break me. 

And if you or a loved one suffers from chronic illness, I and others like me are here to tell you that it doesn’t have to break YOU either. 

“So, Erin, what do YOU do?” 

I survive. 

That’s what I do. 

And here lately I’ve been looking for ways to turn my survival into something meaningful: for myself, for my loved ones, and for anyone else facing down similar demons in a society that tells you that your worth is defined by your work. 

I’ve had 10 years to ponder the “worth” of my long-since-limited life. I can’t write like I used to, lead a newsroom like I used to, run a film set like I used to. To date, I haven’t even been able to hold down regular, part-time employment because my symptoms are too severe and unpredictable. 

In a capitalist society like ours, your worth lies in your productive output and economic input. So if I can’t produce like I used to, and the money dries up, where does my worth lie

I spent the first few years of my illness berating myself for my lost productivity. I genuinely felt that, because I could no longer contribute to society in my old ways, I had no worth at all. What good was a journalist in her 30s who could no longer write and edit? Whose bank balance had nothing coming in and everything going out to specialists, tests, and failed treatments? 

To my mind, I was a drain on myself, my husband, my family, my friends, and society writ large. 

But with age and time comes wisdom, and here is what I have learned in the decade since: worth is innate.

The fact that I still balk at that statement tells me just how much mental work I have left to do, but consider: 

Babies. 

Human children contribute NOTHING to the workforce, and, as any parent can tell you, they are catastrophic to the bank account. Yet not one among us (absent psychopathy) would say that a baby is worthless because it’s not “pulling its economic weight.” 

So why do we, through societal norms and public policy, declare that a baby — a drooling, inarticulate mess that’s incapable of feeding or toileting itself — has inherent worth but that an adult with disabilities doesn’t and is “a drain on the system”? 

It’s time we abandon these long-held (and, frankly, insulting) limiting beliefs about worth.

While it’s true that people with chronic illness live physically limited lives, it’s these “worth = work + paycheck” viewpoints, and not our inherent selves, that are truly limited and limiting. 

For those like me who are suffering, I’ll put it plainly: You are infinitely more valuable than your illness and your pain. Despite what deeply ingrained societal messages have been telling you for decades, even if all you managed to “accomplish” today was brushing your teeth, you have value. Immeasurable, undeniable value.

You are not a burden on those who love you.

You are not lazy or selfish or an impediment.

You are not worthless.

This shift in mental self-talk is recent for me, and please believe me when I tell you it was imperative that I make the change. My inner monologue since 2015 has been one of relentless bullying and despair. Because I could not bully my body into getting better, I instead bullied my mind, repeating mantras of my uselessness.

But I am not useless.

And neither are you.

All is not lost. You are not your pain. And joy is still possible. 

A friend, Kelly, recently told me happiness is fleeting, but joy comes from within and nothing can take it from you. Kelly had a massive stroke 16 years ago and is still fully paralyzed on her left side, yet she is one of the most joyful people I know.

She hasn’t been able to work in 16 years. Her challenges are undeniable. But so is her worth. 

And such is her resolve that she’s currently undertaking a disability-modified biking challenge where she plans to bike 16 miles (for her 16th stroke anniversary) on mountainous trails in Utah. 

Kelly couldn’t change her illness, but she decided to change her outlook, and that’s made all the difference. It hasn’t changed how the world sees her, but is HAS changed how she sees herself. 

Kelly survived, and now, she thrives. Not because she physically healed, but because she let go of society’s definitions of what value, worth, and success look like. 

And I hope to follow her example. 

“So Erin, what do YOU do?” 

I learn from others who’ve gone before me.

I survive.

And, gods and my resolve willing? I thrive. 

I’m worth it. 

And so are you. 

Even if all you’ve done today is brush your teeth.