Though I’m a longtime fan, I avoided reading Toni Bernhard’s “The Extra Burdens Faced by Young People with Chronic Illness” for a few days. Its existence made me a little anxious: It just felt too on-the-nose, too sad. I’ve had a few good weeks lately, and I prefer not to drag myself down with pesky “reality.” (Chronic illness, after all, requires a deft mix of fortitude and denial. Hello from my floating cloud-castle! Free Twinkies for everyone!)
Once I made myself click through, my expectations were exceeded in both directions: I felt both heard and crushed. Ms. Bernhard’s piece is important and helpful, especially to an outsider seeking to understand our young experiences. But, to someone who has been living with illness for 2/3 of her young life, the article felt heavy—like reading about all the ways you’ve effed up your taxes, or getting a letter from an ex you don’t want to read. It’s all true, but that doesn’t make it any easier to handle.
I’d add to the list that we young people with chronic illness have another burden: having to worry about the ways in which we’re burdened.
Chronic illness is, in many ways, a curse. But like many curses, it’s not without its backhanded gifts. So here is my companion response to Ms. Bernhard’s article: “Young, Fun, and Chronically Ill: Owning Your Extra Burdens.”
1. Lifestyle (aka "Go Off the Grid, Young Man")
I went to a college prep high school and then a competitive liberal arts college. The message funneled to us students was clear: “You’re a beautiful and unique snowflake! You’re the smartest and the prettiest! Go out there and ACHIEVE, you fancy so-and-so!”
Besides the fact that, in retrospect, these institutions were paid to tell us that (that’s what tuition is, right?), it was a tough lesson to learn that I needed to set different bars than my friends. Not necessarily lower, just differently-placed. Now, at 28, many of my peers are well into their chosen careers, getting married, and buying houses. By contrast, I’m juggling a few freelance gigs, monologuing to my tiny dog, and trying to keep existential crises at bay. Though I'd never have chosen it, I'm really enjoying my current life.
It took me years to realize, but each of us gets to design our own life according to our own likes and/or abilities. So what if I’ll never be an astronaut, ballerina, gravedigger, or financial analyst? At this point in my life, it’s important to have my days free for appointments, minimal stress, and hopefully a little exposure to sun. Crohn’s made me shift my lifestyle to fit my health because I can no longer sacrifice my health to fit my lifestyle. Once I accepted this, my days got much more enjoyable.
For those of us who are young and chronically ill, our health will derail our plans more often than we can count. It takes tremendous pluck to mourn, adapt, and move on—but often, "Plan B" (or C, D, E...) is better than we could have expected.
2. AP Personal Growth II: "Perspective" for Days
Our generation gets ripped apart for our supposed narcissism, myopia, and entitlement. You know the fastest way to combat these traits? Grow up as “the sick kid.”
It’s hard to describe my 18-year experience with Crohn’s in printable, family-friendly terms. However, I thank my lucky stars for the radical compassion my health has engendered in me. As a result of my own struggles and exposure to dozens of wonderful healers, I have learned to hold space for anyone who needs it, without judgment or interruption. Nothing shocks me anymore. I count "empathy" as a superpower.
As it turns out, experiencing suffering and hardship just makes you more tuned in to others' suffering and hardship. Everyone has something to battle, and we’re all in it together. Illness makes you realize how linked we all are, and your vulnerability allows others to be vulnerable around you. This hardly makes me special: I’d wager our sickness turns most of us half-Jedi.
3. Dating: A Real Time-Saver
In her article, Ms. Bernhard quoted a young woman with Lupus whose date rejected her when her treatment schedule prevented her from attending a concert with him. Let me just say, lovingly, as a member of the species: “That guy? What a d-bag.”
Yes, the rejection always stings, and yes, it’s hard not to take it personally. I’ve been in her shoes many times. But it also sounds a lot like her Lupus helped her dodge a selfish, superficial bullet. If he wasn’t willing to reschedule a date, how flexible would he be when she actually needed support? To paraphrase one of my best friends, happily married to a stellar dude: “Giggling and walking on the beach is not marriage. Both being up at 3am, puking because you both got a stomach bug, and liking each other anyway—that’s marriage.” Sing it, sister.
While chronic illness undoubtedly narrows our romantic prospects, it effectively skims off the people who wouldn’t have worked anyway. I am not my illness, and I won’t be sick all the time, but it’s important that anyone I end up with be kind, thoughtful, and compassionate toward me and the world around them. “I have a chronic illness” is a pretty quick way to find out someone’s character.
4. Friends You Would Take a Bullet For
My complicated Crohn’s got so severe that I spent several months hanging out on the razor’s edge between life and death. My ringing phone or bolded inbox filled me with stress, and I wanted only to curl up under the sheets and stop feeling. Even though I couldn’t express it at the time, the love and concern demonstrated by my friends was, for a time, the only thing tying me to this earth. When I really focus on that feeling, it still brings me to tears. A chronic illness truly helps you see what your friends are capable of. It snaps everyone out of their day-to-day lives. Our relationships will never be the same, and for that I am unspeakably grateful.
5. Rapier-sharp Worldview
Many of us young sickies develop a dark-ass sense of humor. If you’ve ever sobbed in an MRI machine or given a phlebotomist pro-tips on how to find your vein, then you’ve earned it! Please sit next to me at any gathering.
Often, stories about we Sick Youngs go along the lines of, "I knew a girl who came down with [x], had to drop out of school, move back in with her parents, and could never get out of bed." These stories are so heartbreaking because they end on a low point—you can only assume things never changed for that girl. That's only half the story, though. Many of us have dramatic breakdowns in our past (and probably will again.) But many of us also find resilience and strength we never knew we had. That's the final gift/curse of chronic illness: We may be frequently down, but don't assume we're out.
Caitlin Caven writes the blog "Better Living Through Snark" on being young and chronically ill. You can read her other, non-illness writings at http://rubyspurflower.tumblr.com.
(Backpacking thumbnail photo by Kevin Dooley under Creative Commons license.)