Chronically Undiagnosed

You know how during a zombie apocalypse, the things you tend to take for granted quickly become limited resources that you need to fight for your life for? You know, the basics: food, water, medicine, crossbows and other brain-piercing weaponry — just the day-to-day necessities. Well, my reality makes each day feel like I’m trying to survive a zombie apocalypse.

My energy is a very limited resource. As in, I basically have none. While doomsday preppers and CrossFit enthusiasts team up to loot a zombie-ridden Walgreens and come out unscathed (they’ve been prepping for this moment their whole life, you know), I’ve formed an alliance with some sewer rats in a damp alley, where I attempt to hide and rest among moldy scraps of cardboard. It turns out that the sewer rats have nothing to gain from this alliance, however, and they’re not so great at sharing their rations. I try my best to negotiate a deal — I tell them I’ll go find us a nice Cabot cheddar tomorrow (all the while praying I’ll have the energy to do so), but they don’t seem to understand. Then tomorrow comes and I feel positively hopeful. Visions of cheddar and celebratory rodents dance through my mind. But when I try to stand, it seems as though it’s already too late. My body has given up (cue Alanis Morissette’s Ironic and some rainy-day B-roll).

I know what you’re thinking: when the apocalypse comes, Olivia is dead-weight — nobody invite her to the bunker! Plus, she’s been talking to rats? Maybe we should call someone? Or maybe that’s not what you’re thinking, after all. I do that sometimes; I pretend I can jump into the minds of others and know exactly how they must feel about me. And when I do this, you all seem so cruel, by the way.

My point is that I simply can’t keep up. If not with the sewer rats, certainly not with the CrossFitters, and definitely not with the badass chick with the armless pet zombies and the katana (apologies to those who don’t know The Walking Dead and have now deemed me clinically insane). I’ve spent many years being poked and prodded by people in medical gear — gallons of blood have been drawn, thousands of dollars spent, and at the end of the day it’s still a lot of, “maybe you’re just stressed.” HA! STRESSED? ME? Why, of course I’m stressed. I’m sitting here decomposing on a pile of cardboard in some back alley while my life passes me by. Plus, the zombies are coming! I’m practically begging for answers at this point (and that’s saying something, when simply asking for anything from anyone involves quite a bit of pride-swallowing), but it seems my efforts are futile. And if one more person asks me, “have you tried vitamin D?” I might have to borrow that cool chick’s katana and come after them.

If there is one thing I know, it’s that the mind and body are one and the same. When doctors see “history of depression and anxiety” on my chart, they treat me differently. I know this, because I’ve also seen plenty of doctors who didn’t have my full medical history in front of them when we met. Those have been my favorite appointments. They’re like blind dates that don’t require freshly waxed brows or name-brand mascara. Some people are serial daters, some serial killers…I’m a serial “new patient.”

I’ve been conditioned to feel as though a “clean slate” is the only way for people to really hear me when I say: “I am sick all the time; I have chronic sinus infections with pain in my face that makes it impossible to get out of bed many days; I feel like I am moving through a fog — I cannot focus or think clearly; I catch every cold virus known to man; I went weeks where I couldn’t swallow solid food because my esophagus was so constricted; I have an incessant cough, perpetual headaches, and my periods make my entire body go haywire; my limbs turn to lead, my pain skyrockets and any chance of functioning as a normal human goes out the window.” Just to name a few.

But of course, when you see a doctor there is an expectation that you’ll have a much more concise “reason for your visit,” (this is often a one-line field on digital forms — one line is all you get — don’t be greedy!). You don’t always have the opportunity to talk about “the big picture.” How illogical. When an ER patient arrives with a giant, rusty nail sticking through their foot, their doctor isn’t going to examine just the foot. That thing the foot is attached to — the patient — could have contracted tetanus, they could be in shock, they could have lost enough blood to need a transfusion (it was a really crazy nail, okay?). The point is, the focus is not just on removing the nail, but instead it’s on “the big picture.”

I think I have many rusty nails in me at this very moment. I’m practically a human pin cushion, or perhaps a living voodoo doll. I shouldn’t have to walk on rusty nails for the rest of my life just because my doctor(s) can’t see any blood or an infected wound. Just because they aren’t accustomed to looking at the whole picture.

The gaslighting that so many women in particular experience at the hands of medical professionals is unacceptable. And while it’s horrible to be gaslighted by doctors and specialists — the very people you are paying for help — sadly, it doesn’t end there. Trying to explain my default state of “survival mode” to the rest of the people in my life has proven even more difficult, so I usually don’t bother anymore.

It’s a strange thing to “wish” for a diagnosis. More than that I wish for good health, of course, but that simply hasn’t been my reality. And a diagnosis is like a permission slip — a socially acceptable explanation for the fact that I’ve been crouching in an alley with a permanent messy-bun (it may be a dreadlock, at this point) while the rest of the world still appears to be fighting. Without one, your coworkers, your peers, and even your friends and family may begin to diagnose you themselves: hypochondriac, sensitive, drama-queen, “sickly” (as if that in itself is a slur — and remember, it’s all your fault — not enough vitamin D!), or maybe “she’s just feeling blue.” For the record, if you weren’t “feeling blue” before hearing someone describe depression that way, you sure will be after.

Okay, back to the point of all of this. Living with chronic symptoms or illness (with or without diagnoses) is a total bitch. If you’re like me, you probably have mostly bad days with a few higher-functioning ones scattered throughout. Many people don’t have any high-functioning days. And many people seem as though they never have bad days at all (I’m looking at you, Instagram influencers). Don’t compare yourself to any of them. Not to the CrossFitters, the do-gooders, or to Michonne from The Walking Dead. You are valid as you are. I’m not going to tell you to “keep on fighting,” or any aggressively motivational bumper sticker bullshit. If you can’t “fight” today, that’s okay too. Rest. I still see you. Your experience is still valid. And I hope more than anything that you feel supported during your journey, and know that you’re not alone. Even in moments when you’re surrounded by nothing but sewer rats and flesh-eating zombies, don’t lose sight of hope for more of the good days. I know they’re coming for both of us.

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