What Doesn't Kill You A Life with Chronic Illness - Lessons from a Body in Revolt

But I was dying, I was twenty- six years old and I was dying, and no one wanted to ruffle feathers to help me not die. That was the deepest loneliness I've ever known.

I needed therapy as a kid, really, and I most definitely should have sought it out as soon as I was diagnosed with IBD. Chronic illness is enough to need professional help. But it doesn't exist in a vacuum. Pain thrives alongside other pain.

"I wish to be happy and healthy, whatever that means.”

The dilemma chronically ill people live with is this: We need to appear healthy enough to move through the world, but we need to be sick enough to receive proper treatment. We want family members, friends, bosses, and colleagues to believe that we're well enough to function, but we also want doctors to listen to us even when our symptoms aren't visible.

Capitalism would have us think otherwise, but human beings are worthy of love, admiration, and respect regardless of how much we produce, give back, expend, or earn. We're expected to rest only when we’re run ragged, but why do we need to crash to “earn” rest? Why do we need to prove we’ve worked hard enough, long enough, to “deserve” it?

Your world is not the world. You must care even when—especially when—issues aren't immediately yours.

Empathy is more than putting yourself in someone else's shoes; it's using your power fight for changes that don't directly benefit you. It’s more than understanding why another person feels the way they do; it’s learning about the systems (or lack of) that contribute to their emotions and behaviors, then figuring out how you can help build or dismantle and rebuild those systems.

Our country is built on all kinds of cruelty, and that's how many of its citizens— chiefly its white citizens —survive and thrive. Election results can't change that.

And being thankful doesn't mean you're always happy—gratitude and unhappiness can coexist, as they often do for me. Allowing sadness, sitting with that discomfort, and exploring where it comes from, feeling it all, is what paves the road for unfettered joy.

I’m lucky, see. Though complications of Crohn's disease can and do kill people, as long as my disease stays managed as it is now, and as long as l don’t get a secondary infection, I can live just as long as I would were l healthy. My illness isn't terminal. Still, I sometimes feel very unlucky. I have wished for finality, for escape, for an end to my illness even if that meant death. Is dying better than living life with incurable illness? The answer is, for me, no. But it took a long time for me to decide that my life is still worth living, even more so, with forever sickness. And it's completely normal to question it, as I've discovered in my support groups and via conversations with other chronically ill people.

Sometimes people ask, "How long will you need medication?”. The answer is forever, so long as I can access it.

Our identities get tangled up in what we do for a living, and when that changes or ends due to chronic illness, it makes us feel as if we don't know who we are or what we offer to the world. We become fearful of how others think of us.

If you're a healthy, able-bodied employee and you see a chronically ill and/or disabled coworker being treated badly, please ask what you can do to support them. Use your voice for them. We expect the most marginalized among us to speak up for themselves, but what that really means is that we expect the ones who have the most to lose to put themselves at further risk. In the workplace, healthy, able-bodied folks will continue to wield more power for the foreseeable future.

Chronically ill folks in America are wholly aware of this harsh truth: Lack of money makes us sick(er) and being sick(er) leads to lack of money.

Anyone who tells you that money doesn't buy happiness has never been hungry or had the lights shut off or had to skip medical treatment—and they definitely haven't known the stomach-gnawing fear that comes with late paychecks…

…and it reminds me every day that, even if I do fall into a bad habit and blame myself for things over which I have no control, as the poet Rainer Maria Rilke wrote, "No feeling is final."

If we're able to find something that caused an illness, that reinforces a sense of order in the world. It means there's a definite cause, and if there's a cause, there must be a cure. Blame leaves room for that possibility. But when illness happens for no reason other than "genetics and environment,” and there is no cure, the desired sense of order is thrown to the wind. I once saw this on a bereavement card: "Shit doesn't have to make sense." And it's stuck with me. I used to think there was some kind of cap on pain—that once a person had hit a certain level of hurt, they wouldn't have any more. "God doesn't give you more than you can handle," as the saying goes. But that isn't the way it works at all.

(You know how you felt about the internet as a vital channel during COVID-19 isolation? That's how chronically ill and disabled people feel about it all the time!)

And as hard as we may try, addiction will never, ever be cured by love.

A proper diagnosis meant I could begin the right treatment. It gave me hope right as I was preparing to call defeat. The right diagnosis is a gift not all chronically ill people receive. Many spend years in limbo going from doctor to doctor, test after test, with no certain answers. (Some chronic illnesses don't yet have a diagnostic test. …

But if I’ve learned anything these past couple of months, it's that I should expect to be that minuscule percent, that anomaly, that single grain in a stack of rock.

No matter how much you try to explain, people (yourself included, sometimes most of all) expect you to get better already — and when you don't, they resent you, even if they don't mean to.

Health-care providers need the training to speak to their patients about domestic violence, and to help them properly should they discover abuse. We must uncouple health insurance from employment and income, making it affordable (read: free at point of service) for everyone, lessening the grip of financial abuse. We need trained responders who are not police; cops are notoriously bad at handling domestic violence, and there's a systemic partner abuse problem within our national police force. And we must establish better systems to help victims who are without the support or financial means to leave, then keep them safe when they do leave (the time when they are most at risk). There are mountains of work to do.

It took panicking to the point of blacking out and falling down to make me think, “Huh, something might be wrong here." It's a great regret that I didn’t seek help sooner. Years sooner.