Kathryn Fleisher | Business Manager
Beads of sweat roll down your back, soaking the waistband of your pants. You barely notice. It feels as though someone is wringing out your insides like a wet rag. You try shifting your weight to relieve the pressure on your abdomen. It doesn’t work. You try it again. And again. And again. Quickly, your weight shifting becomes an urgent rocking, a cry for help, a physical manifestation of the intensely growing turmoil your body is in. The incessant squeezing of your insides pushes air up through your body and a groan escapes your lips without permission. You can’t help it. You’re drowning in yourself. You desperately need someone to help pull you out.
But you’re not drowning in yourself. You’re drowning in tears. Maybe if you can stop the tears, someone will see that you’re trying to help yourself and will come to help you. Yes, that’s a good plan. You take a cautionary, shallow breath and pray that your body will cooperate with you. You manage to momentarily stop the flow of tears, to hold your body steady on the sterile white bed. But holding everything in is too much. Your plan backfires.
“Somebody help me. Help me PLEASE,” you yell through gritted teeth. Heads turn towards you. But no help comes. Only eye rolls and whispered hypotheses. Maybe you’re a drug addict. An attention seeker. A hypochondriac. But you know what you are. You’re a woman in pain and no one gives a shit.
Your outburst earns you one thing: an empty urine specimen cup.
One of the nurses (who previously supplied you with a subtle eye roll) approaches your bed. She tells you where the bathroom is, how to collect a proper specimen, and where to go when you’re done. If you weren’t still drowning in yourself, you may have found it funny that the nurse told you to “return to your room when you’re done.” That would imply that someone had given you enough attention to assign you a room. (The Emergency Department is busy that night and you haven’t earned your own room. There may be more emergent cases that arrive. The rooms must be kept empty for them. The hallway will have to do for you.)
Grateful for an opportunity to prove that you need medical attention, you take the empty cup from the nurse and turn your attention to trying to stand on your shaking legs. The pain in your abdomen ignites, shooting up into your torso and down into your legs. A wave of nausea accompanies the pain. You can’t stand up straight. You can’t think about that. You count the number of steps it takes to get to the bathroom instead.
You make it. Barely.
You leave your now full specimen cup on the plastic-covered bathroom ledge labeled “LAB – OUTBOUND.” On the trek back to your bed, you try to convince yourself that the bright red sample will be enough to convince the doctors and nurses to help you. You don’t yet know that it won’t be.
You collapse back into bed and curl into yourself. Every nerve ending in your body pulses with pain; a fiery pain that intensifies with every breath, threatening to consume you whole. You wonder how it’s possible that being ignored and mistreated hurts more than whatever is causing you to pee pure blood.
The absurdity of your situation starts to make you wonder if it’s all in your head after all. You start to wonder if they’re right, if you’re just desperate for attention. You convince yourself that you’ve somehow willed this to happen to you. You start to panic.
The pain in your body and the panic in your mind begin churning, seeking one another out in the tumultuous universe of your body. The pain eggs on the panic – taunting it – making it angry. The panic attacks the pain – building its strength – making it ruthless. The battle between the agents of your body and the agents of your mind transforms you into exactly what you’ve been warned against becoming: the hysterical, out of control, attention-seeking woman. You’ve failed at being a good patient. (Whatever that means.) You’ve failed the women that will inevitably come through this emergency room after you. You’ve failed yourself.
Your failure, however, is not so much a failure of self as it is a failure of Western medicine to give patients the benefit of the doubt.
Your failure is a failure of physicians to trust women.
Your failure is not your own, it is a fear shared by women the world over.
In her collection of essays on empathy and female pain, Leslie Jamison says it better than you ever could: “The post-wounded woman conducts herself as if preempting certain accusations: don’t cry too loud, don’t play victim, don’t act the old role all over again. Don’t ask for pain meds you don’t need; don’t give those doctors another reason to doubt the other women on their examination tables.”
Despite your theories on the role of gender discrimination in Western medicine, your not-really-a-failure-failure is greeted with a familiar response: patients in pain get treatment, hysterical women get medicated.
A nurse approaches your bed with a needle and a clear vial marked with a bright red sticker. She hardly glances at the plastic identification bracelet around your wrist before injecting the contents of the vial into your IV. The last thing you remember is the feeling of melting.
Back at home, your roommate wakes you from your drug-induced sleep. She explains that in the time it took to receive adequate treatment at the hospital, your UTI turned into a kidney infection. She tries to hide her annoyance, but this isn’t the first time you’ve had this conversation. She’s the one that talks to the doctors after they’re drugged you up; she’s the one that gets to hear the non-apology-apologies from the doctors; she’s the one that gets told that you’re “too young for that” or you “looked fine when you came in” or “there’s no way they could have known what was going on” or any number of other excuses that the medical staff so often use as shields instead of simply apologizing for providing inadequate care. She’s almost as sick of it as you are.
She sees the pain that the doctors cause in their attempts to “fix” you. She says it seems like they break you more than they repair you; that they cause more pain than they take away. But that’s the thing about pain – it can’t be measured on a scale or through a blood test. So to your doctors, it simply doesn’t exist. Or if it does, it doesn’t really matter.
But she has a backstage pass to your life. She sees the never-ending destruction of your body by the medications you’re so relentlessly prescribed, she sees the pain you try so hard to hide, she sees the carelessness of your doctors in your late-night breakdowns. She knows how deeply you resent modern medicine but how very grateful you are for its existence.
Each time you call your mom before an appointment or a procedure, she reminds you to “avoid the hysterics.” She says she means to stay calm and explain your pain, explain your side effects, explain your body, explain, explain, explain. You know she means that if you cry – if you show your frustration for what it is – you’ll be labeled as a hysteric.
Don’t cry too loud, don’t play victim, don’t act the old role all over again.
You’ve been immunosuppressed for over 10 years. It’s why you get such intense infections so frequently. You were diagnosed with a serious autoimmune disorder at age eight and spent the first three years of your diagnosis desperately trying different medications, therapies, diets, programs, procedures, and god knows what else to get your disease under control. During those first few years, you were such a serious case that you attended sick kid camp. The doctor to child ratio at Victory Junction Gang Camp was 1:3. You miss it sometimes.
The treatment that finally worked for you is essentially a low-dose chemotherapy. When you were little, you used to have to go to an infusion suite once a month to have the nurses administer your low-dose poison by IV. Now you keep it in your fridge and inject it into your leg each Tuesday night. Your at-home injection set up – your needles, bandages, sharps containers, alcohol pads, and impressive anti-nausea pill collection – serves as a weekly reminder that you’re not as healthy as you like to pretend you are.
You don’t “look sick” so you aren’t treated as such. You’re grateful that you can hide your illness, but you resent how intensely you work to keep it hidden. You’re young and invincible, or else weak and dramatic. Neither are true. Both are true.
“The last thing I wanted was to be was a patient. I didn’t like sick people. First of all, they were sick. Sick was not well, not able, not working, not making things better. Sick was surrendering, caving in. Sick was wasting time, not adding up. Sick was alone and stuck as the rest of the world moved by.”
When you first read Eve Ensler’s In The Body of the World, you stopped at this paragraph. You flipped the book upside down, leaving it splayed across the faux wood table in front of you. You got up and took a lap around the library, needing to get distance between you and Ensler’s words. Her writing made you uncomfortable. You saw yourself in her words despite your best effort not to. She made you feel ashamed and comforted, validated and worried, relieved and confused.
You pride yourself on being a compassionate person. How could you have such little compassion for yourself? How could you recognize yourself in such an ableist sentiment? That simply isn’t you. Except for the fact that it very much is you.
Ensler forces you to acknowledge that to be “sick” is to be forced to prioritize your physical health. The very thought of focusing on your own body makes your palms sweat. In the back of your mind, you hear your loved ones reminding you that you have to take care of yourself before you can take care of others. You wonder what you’re supposed to do if you take care of yourself by taking care of others. You fear you’re failing at both.
You hate writing about yourself. You hate writing about your health even more. You worry that if you write about your health, it will become the only thing you write about, the only thing you think about, the only thing people know about you. You’re terrified of being labeled as “disabled” and even more terrified that you think this way. You know you’re disabled with or without the label. You know that sharing your truths will be hard. You do it anyways.