First, your body must comply by having an ongoing issue that is not easily solved with a round of brutal antibiotics. Then you must prove that is not Just Depression or Just Anxiety or Just Your Questionable Life Choices that are making you ill or think you are ill.
This is harder than it sounds.
Find doctors through personal referrals, your ears perking up when you hear, “These are the doctors doctors use.” Apologize for your insurance. Pay your co-pays in cash. Pay follow-up bills the same day you get them. Pretend you have the money. Pretend the money simply doesn’t matter.
Arrive at least twenty minutes early to every appointment. Fill your paperwork out with a careful blue pen. Print. Think of the person who will have to transcribe this nonsense.
Though you arrive twenty minutes early, you won’t see the exam room until thirty minutes after your appointment time. Do not complain or question. Just wait.
Learn to identify pharmaceutical reps by their fit bodies, slick haircuts, bright eyes and perky faces. They’re the reason the exam rooms often smell of pizza or Chinese food. They make the entire staff happy and excited, so it’s good when they’re there, even if they’re the reason you won’t see a doctor until an hour after your appointment time. They make the staff happy, maybe some of that will trickle down to you.
Pretend you have never used Google for anything other than recipes and turn-by-turn directions. Pretend you’ve never talked to another soul about these troubles, often referred to as “tummy troubles” which makes it sound adorable and not like your entire digestive system, from stem to stern, is working to make your life an unpredictable humiliation.
Learn that the ways your body shock you are just a list of symptoms to everyone else. The blood, the pain, the total loss of control? There’s something reassuring about how these symptoms terrify you but seem to bore your doctors.
Give vial after vial of blood. One nurse exclaims that you have good veins and she takes four vials of blood without bruising you. Another nurse explains your veins are impossible to find and she takes two vials of blood that leave your entire inner arm painted with a rainbow bruise. On future visits, don’t you dare ask for the nurse who likes your veins, you will never see her again.
Pee into little cups and clean the exterior obsessively before leaving the bathroom and handing it to a tech, golden and still body-warm. Poop into a little bowl that looks like an upside down cowboy hat. Howdy howdy howdy. Then dig little samples of poo out with little sticks into little vials, all the while hating yourself and everyone else but mostly yourself. Make that final delivery with a sad smile and an earnest apology.
When your labs come back, you’ve got an elevated white cell count and your iron is so low, it makes your doctor laugh, “I’m amazed you’re walking around! You’ve got some internal bleeding going on for sure.” He prescribes iron pills that blast through your guts, leaving you crying and sweating on your bathroom floor.
Don’t tell anyone at work what’s going on. Don’t take any time off.
When you learn you must have an endoscopy and colonoscopy and there’s an opening four days from now because of a cancellation, call your spouse from the appointment desk and say, “Guess what, baby, I’m getting double stuffed!” This will make the woman in charge of scheduling laugh and tell you, “You’ve got a sense of humor, you’ll be alright.”
Study for your endoscopy/colonoscopy like you studied for midterms in college. You’re going to prep for that procedure better than anyone else that came before you. Chug GoLytely and imagine your guts lit up on a computer screen, all pink and gooey, and the doctor saying, “My god, have you ever seen a cleaner colon?”
When you wake up during the procedure, and you feel the camera rolling through your guts, the biopsies being grabbed from your intestinal walls, moan but don’t scream. Watch the screen and see your inner beauty, much redder than pink. Later, spin it and say, “I’m so glad I wasn’t overmedicated.”
Still loggy from the drugs, your doctor will rush up to you and says the words you’ve wanted to hear so badly. “You had no polyps, no tumors, it isn’t cancer.” It isn’t cancer! But then, “It’s Crohn’s disease or ulcerative colitus, it doesn’t really matter which.” Fight to remember these words so you can tell your spouse because the doctor will be long gone by the time you’re allowed to see anyone who knows you.
Defer. Always defer. Defer to the nurse with the clucking tongue. Defer to the insurance representative and admit it probably wasn’t necessary. Defer to the doctor with the soft hands and wet sympathetic eyes and no answers. Talk about your body as if it’s a faraway country ravaged by stupid disasters.
Always respond positively to any dismissal of alternative therapies or treatment. Nod and chuckle when the good doctor says gluten is no one’s enemy but the celiacs. Meanwhile, the date you last had bread is burned into your memory.
When one doctor tells you results from acupuncture are purely placebo, don’t say, “Hey, placebo sounds great, sign me up!” Something about that response will really piss him off.
Be good because if you’re not, you’ll find yourself labeled hysterical, depressed, bored, lonely, a drug-seeker, attention-seeker, perfectly healthy with a low threshold for discomfort. Bad behavior includes crying when talking about the time you pooped your pants in Trader Joe’s or expressing anything other than gratitude when you have to wait three months to see the magic specialist who might know what’s wrong.
Think about dying all the time. Plan your funeral but never get further than thinking about Adele’s “Take It All” and Mary Oliver poems and how cliche the whole thing would be.
Live with pain. Walk around with it like a ratty security blanket wrapped around your throat, smelling of pee and saliva and sneezes. Some days it chokes you, some days you cry and cry but most days you just trudge and push through and try not to mention it to anyone because you know it leads to questions about your doctors, what do the doctors say, what medications have you tried, and then a list of woo woo suggestions, most of which you have earnestly tried.
When people ask what’s wrong with you, be cheeky. “I have Dead-On-The-Prairie Syndrome” or “I’ve got the vapors” or “My humours are out of balance.”
Adopt a strict diet and exercise regimen. Bring your own food everywhere and make fun of yourself at every turn. Take handfuls of supplements. Meditate. Go to sleep at nine p.m. every night. Trudge through your days but always with a quick smile, an easy sense of humor, and an appreciation for how hard everyone else’s life is. Be cheerful and easy and then maybe someone will want to help you.
Google “Am I dying?” You’re pretty sure you’re dying. But if you were dying, wouldn’t other people notice?
Take all the medications prescribed, even when they make everything much, much worse. Call the doctor, call the doctor, call the doctor. Leave a message, leave a message, leave a message.
Be good. Be so good. Deep inside you believe that if you are good, maybe this pain and humiliation will somehow lift, pull away from you and simply disappear as easily as it came.
When you’re finally called back after two weeks of chasing the doctor, be jovial and grateful and fast, he’s got a lot of people to call back. When you tell him the medications are no good, he gives you permission to quit but has nothing else for you. “Let’s hope you get pregnant soon, you might go into remission then.”
You know you wrote Infertility in your list of issues in that careful blue pen. You wrote it over and over and over again. But okay, let’s hope. It’s all you’ve got.