Living with a chronic illness is something I wish I could explain in 150 characters or less; but the reality is it’s something that affects my life in varying degrees, depending on the day.
The last several days have been, on a scale of one to ten, almost a seven (with ten being in the hospital, hooked up to saline bags and IVs, à la a few months ago). I haven’t kept down a single meal, I’m behind in my assignments for bar study, and I literally feel like I’m being held underwater. It feels like I’m slowly gasping for air, while simultaneously drowning.
Life as a spoonie (see post here) is something I’ve had to adjust to; I haven’t always been the girl who orders all her food at a restaurant with substitutions because “as is” will make me sick for days…or the girl who skips out on social gatherings if there isn’t a guarantee there’ll be an available restroom nearby (see ya, camping and long roadtrips).
In college I used to go to the gym every day with my best friend; it’s taken me five years to resume some modicum of activity. Nowadays, a vinyasa yoga is my “strenuous activity.” I’ve tried to get back into running (something I used to love doing), but it usually results in me projectile vomiting all over the ground (I’ve only tried it outside, because I’ve been told puking in public at a gym is typically frowned upon).
Super cute, I know.
And no, I wasn’t drunk…projectile vomit is one of my most visible symptoms (aka my best party trick, because I can/have hit things (and the occasional, unsuspecting person) upwards of five plus feet away from my face).
My body isn’t what it used to be and it kills me to put that into the universe. Anyone with chronic health issues knows (unless you were born with what you have), adjusting to a new reality of limitations and over explanations to people who don’t live their lives in fear of unpredictable symptoms, is downright exhausting. No really, please tell me again how you can eat things that have nuts in them and I just need to “get over my fear” and eat them already. Believe me, I’ve tried, and it always ends in upper and/or lower gastric distress.
The point is I’ve had to learn to adjust and not compare myself to all the IG models who post daily workouts, while I’m over here still recovering from a workout three days ago…and by workout, I mean it was a workout to put on some yoga pants and schlep my ass to the studio to lay in savasana for 20 minutes (half joke, half serious). My “best” workout now isn’t something I can compare to anyone else’s “best”…and I’m learning to be okay with that (some days I still struggle with that, tbth).
Another aspect of my symptoms is when I’m dealing with something stressful, I can’t just shut it off. My brain might be done figuring out the situation (like the one that’s kept me from keeping any food the past few days), but my body retains that stress like a supercharge and continues to feed off the negativity for days (sometimes weeks) to come.
I guess what I’m trying to parse out is, in addition to the #stayfocused and #goodvibes posts I throw up, there’s another reality behind the screen that’s not so pretty.
In fact, today, one of the times while I was puking my guts up (exact consistency was: one beef burrito, six oreos, iced tea, and two slices of watermelon), I was like “damn, I should totally take a picture of this, because I’ve yet to actually post where I’ve put my face for the better part of five years on my blog.” Alas, I’ve not once posted a picture of the beautiful interpretations of Van Gogh’s “Starry Night: Toilet Edition.”
But I didn’t, because (a) that’s actually fucking gross, and (b) I think I can accomplish more with my words than any filter could spin on my body’s fucked up way of coping with stress.
I’ve seen a lot of posts recently (as in, literally the last day or two) by influencers and friends alike, about how social media is nothing more than a highlight reel. I think a lot of us forget this, so we compare snapshots of other people’s lives to our own, and when our lives fall short of a well-filtered moment, we feel inadequate.
If people aren’t photoshopping their bodies into inadvertent advertisements for body dysmorphia and unrealistic (hell, oftentimes impossible) expectations of physical “beauty,” they’re carefully curating a feed that leads others to believe their own struggles are uncommon and unjustified (aka the perfect set-up for depression, anxiety, and a slew of other tangents of unhappiness because you think you’re the only one dealing with shitty things in life).
Let’s be real – even the “prettiest” girls by society’s unrealistic standards struggle with body confidence. (I met this girl at an event that has AMAZING legs, but she’s so self-conscious about them, she always wears pants/ leggings/ long skirts. Even with bathing suits she wears floor-length cover-ups, but when she showed me what she “hates” so much, I was blown away by how beautiful they were…but she didn’t see that; that wasn’t her reality). Even the trendiest bloggers on IG who posts photos of açaí bowls and Tahitian waterscapes fight with their boyfriends/ husbands/ significant others over stupid shit (or, maybe they don’t even have one of those and they have insecurities about that). Even the healthiest foodies out there eat Doritos, throw back soda and/or something that isn’t a derivative of kombucha or charcoal detox tea, and don’t go to spin every day.
Theodore Roosevelt once said, “comparison is the thief of joy.” Boy, was he right. If only he could see how much our society relies on comparison as a means of marketing and commerce. Without social media, can you imagine how much healthier our mindsets would be without any measure of comparison to how others live around the world?
That’s not to say I’m shitting on social media/the internet/etc.. I think it’s a great resource for collaboration and connection, but I do think there’s such a thing as “too plugged in,” wherein we place a lot of undue stress on ourselves. “I need to workout more, eat healthier, be more social, try new things, etc., etc., etc.”
Yes, trying new things is great. That’s wonderful that you want to be more conscious about your health, but before you go on a manic spree on spirulina and maca, pause for a second and take stock of all you’ve got in your life already. I have to stop myself at least once a day and remember, “I’m doing all that I can with what I have right now.” You have to take the bad with the good, because you’d be incomplete if you forgot about the bad stuff (shitty as that may be).
I created this blog because it was important for me to talk about the things that aren’t pretty about living with a chronic illness. Mental health can get ugly. Physical, chronic illnesses can get ugly (see toilet flatlay mentioned above that I’ve never actually posted, but would totally be applicable right now). Life can get ugly, but that’s where growth and strength can take root.
In the words of Franklin Roosevelt, “a smooth sea never made a skilled sailor.” (Yes, I’m on a roll with FRD quotes)…
You don’t learn how to overcome difficult situations when everything’s easy. Half of the things I do today that I find inordinately difficult, I once took for granted (like working out and not worrying about getting to class early so I can get a spot close to door when I get sick).
I used to eat whatever I wanted, when I wanted…now, even if I’m careful about avoiding foods I know exacerbate my symptoms, I still get sick when things like unexpected stressors creep into my life and linger longer than I thought they would.
I used to not talk about my own struggles because I thought I was alone in what I was going through. None of my friends had gastric disorders. I couldn’t relate to people online with these super healthy diets, because a lot of the “super healthy” foods are irritants that make my symptoms worse. I felt really lost until I met someone on Instagram who posted a picture of her colonoscopy prep, as I was prepping for my second one, in six months, at only 23 years old.
Suddenly, I realized I wasn’t weird for not being like everyone else. I stopped wallowing at my pity party of one and started to zero-in on what makes me happy (like writing about books, beauty, and bullshit).
Don’t beat yourself because you’re not like the people you see online (or even people you know, because the same filtered approach applies). I can promise you that they’ve got unglamorous moments and for every cute #ootd, there are 500 rejected photos, and that super cute squat she’s in (that photographs like fire) hurts like a mofo IRL.
We don’t need to all have the same experiences to create a shared understanding of compassion.
You don’t have to have a chronic illness to understand my journey, but maybe in reading about my experiences, you’ll be a little bit more compassionate to the kid who parks in a handicap spot but doesn’t have crutches or a broken leg…because their insides don’t function like yours, and they might not be able to walk across the parking lot but for that blue spot you haphazardly parked next to (read: park more considerately, and no, those lines next to a handicap spot are not your personal loading zone).
More than anything though, take a moment to be kind to yourself, because your experiences are just as worthy as the person with the aesthetically-pleasing, cool-toned filtered photos on the internet.
Well, that’s all I’ve got. Maybe now my actual vomiting will subside because I’ve word vomited all over this post.
Spoonie Adventures in Books, Beauty, & Bullshit
I'm a twenty-something year old recent law and business school grad living with a chronic health condition. Follow along on my shenanigans.