Safe for Now

Being chronically ill in a world obsessed with hyper-productivity can take a serious toll on a person's self-worth.

When all your peers seem to be starting businesses, backpacking through Europe, and curing cancer, it's pretty easy to feel like you're falling behind. (I mean, the only thing you accomplished last week was binging two more seasons of Friends while coughing your guts out, pausing only to shuffle-run to the crapper for another round of "Vom or Diarrhea?'')

One of many ER visits from the past three years

One of many ER visits from the past three years

As a sick person, this is my biggest bringer of unhappiness: being forced to slow down.

I often express to those close to me that I feel like a lump, that I don't contribute to the world, and that I don't really do anything.

Of course, in these moments, my loved ones reject my sentiments and insist that my life does matter. That I achieve more than I think. That I can't help being diseased.

If sprinting through life with the masses gives you a proverbial asthma attack, it's not your fault - but I know it can seriously feel that way. Eventually, spending your days in bed can morph into a sad pseudo-identity, like slapping a "Hello, I'm LAZY" sticker to a stained t-shirt. But if I've found one sure-fire way to fight this feeling of isolation, it's this: make sick friends. And when I say "sick," I don't mean "cool" or "dope." I mean physiologically messed up.

A close friend of mine has Crohn's disease, and while cystic fibrosis (the condition that I have) and Crohn's are very different, I've found that confiding in him is still incredibly therapeautic.

He gets how hard it is to stay in school when your illness flares up.

He gets the guilt that comes along with cancelling plans at the last minute because you don't feel well.

He gets that showering without drains/needles/tubes sticking out of your body should be a cherished event. Ditto for sleeping in your own bed.

He gets hospital food, he gets annoying med students (sorry, guys - love you), and he gets being a human pin cushion for phlebotomists at five a.m.

But something I wish neither of us had to get?

Wondering whether or not we'll lose our health insurance.

Traditionally healthy people go to bed each night assuming they'll feel fine the next morning, and most of the time, they're right. They can do what they want in life without first asking, Am I well enough for this? They can plan. They can go out into the world. But when you have a chronic health condition, the luxury of knowing how much energy or comfort you'll have on any given day doesn't exist, nor does the notion that "having a life" is an inalienable right.

To the suprise of many, last Thursday, July 27th, the U.S. senate failed by one vote to repeal the Affordable Care Act (more commonly known as "Obamacare"). However, many people - including the poor, the elderly, and the chronically ill - actually celebrated this so-called "failure" . . . why?

  1. Obamacare protects people who have diseases that aren't their fault by prohibiting insurance companies from denying coverage to people with pre-existing conditions. Cystic fibrosis and Crohn's disease are pre-existing conditions. So are anxiety and depression, as well as everything you see here. Under the Better Care Reconciliation Act (also known as "Trumpcare"), receiving adequate and affordable health insurance would be a fight for anyone with a pre-existing condition.
  2. Obamacare is also what allows young adults to remain on their parents' health insurance plans until the age of twenty-six, which can be life-saving for those with hefty student debt in a scarily competitive job market. Speaking personally, cystic fibrosis hospitalizes me for weeks at a time on a semi-monthly basis; unless my health stabilizes, working a job - let alone one with benefits - just isn't possible. If I wasn't on my parents' insurance right now, I wouldn't be able to afford the doctors that keep me alive.
  3. Obamacare prevents insurers from setting caps on necessary health care services. A cap is a limit on how much money a person's insurance company will dish out to help them survive before essentially saying, "you're on your own." With Obamacare, health insurance caps don't exist. With Trumpcare, lifetime caps could quite possibly be enforced. Lifetime. Caps. As in, one-day-you-might-wake-up-and-be-out-of-insurance-money-forever. This is a monsterous problem for the chronically ill community, who, by no fault of our own, costs way more money to be kept alive than the average Joe.

On the afternoon of July 25th (two days before the senate would vote "no" to repealing Obamacare), they voted "yes" to continuing the push. All signs pointed to Trumpcare soon becoming a reality. I received this text from my friend:

"Hi thinking of you after today's senate vote // :( stay well"

"Hi thinking of you after today's senate vote // :( stay well"

On July 27th, when the repeal was put to rest, I texted him:

"we did it boo"

"we did it boo"

He instantly responded:

"Safe for now"

"Safe for now"

For now. For now. Why are we, two twenty-somethings fighting for our lives, only safe for now? Because eventually, the President and those in Washington who support him are going to try again. And next time, we might not be as lucky.

This blog is not for politics. This blog is not for arguing. But this is real - this is our experience as young adults who are sick against our will. For millions of Americans, this is our everyday.

It's scary. It invokes feelings of sub-humanity, as if we are lesser people for costing the country more money. But in moments (rare moments) like these, the health care guns are lowered and there is space to pause and sigh in relief. And there's no one I'd rather sigh with than someone who makes me feel fully human: a fellow sick kid.