How Your Patients Lose Their Identities, and How to Ensure You’re Not Part of the Problem
As a persistent pain patient, one becomes very accustomed to completing provider intake forms. I would move through them rapidly:
Date of birth, social security number, address? Child’s play. I’d use these questions to practice new handwriting styles.
Insurance info? I knew it all by heart: ID number, group number, claims address.
Referring physician? His contact info’s all saved in my phone.
Marital status? This one always reminded me that we’d postponed our wedding because of my pain. I used to frustratingly draw a line through the check-box answer options and write: partnered.
Occupation? My heart would sink again.
The box is about an inch-and-a-half wide, maybe a half-inch tall.
There’s no room for explanation.
But let me explain!
I have three degrees, including my law degree, which I earned as the top-ranked graduate of my class. I’ve been published. I was supposed to be a lawyer. But I was too sick to work, and I wasn’t even able to sit for the bar exam as initially scheduled. So, I couldn’t write “lawyer.” I could write “law degree,” but that’s not really an occupation.
One time, I wrote “freelance,” as I did freelance legal work when feeling well enough. Well, one physician said to me: “Free Lance? Who’s this Lance guy, and why are so many people trying to free him? Is the millennial job crisis that bad?” Augh. I squirmed in my seat and flushed red, embarrassed that I’d been called out as unemployed. No more freelance.
Unemployed? That carries so much weight and judgment. Am I seeking work? Am I a homemaker? Well, neither. I’m too sick to work. And I was so busy too! I sure didn’t feel unemployed.
Disabled? The world didn’t view me as disabled. I was frequently told: “You don’t look sick!” Or, “it’s not like being an attorney is strenuous labor!” Or, “gosh, you guys would have a much easier time with your finances if Erin could work…I mean, can she do anything?” I felt so much judgment for not being disabled and claiming to be disabled that I hated referring to myself as such. My husband used to have to insist that I use the disabled parking placard in my car, fearing that I would hurt myself by hobbling across the parking lot in an attempt to avoid judgment or snarky comments from others.
My occupation was as a professional patient.
It’s like having two full-time jobs and never being done with work. It’s exhausting, time consuming, requires top-notch communication skills, and is a challenge each day. You get no days off. You have no coworkers. You get no compensation. Basically, it’s crap.
Here’s a typical day:
9am: Wake up exhausted after a poor night’s sleep and take morning medications. My husband left for work an hour ago, but I only got a few hours of sleep. Side effects from a new medication that keep me up all night with nausea and hot flashes. Do some constructive rest positions while lying in bed and practice diaphragmatic breathing.
9:30am: Visit pharmacy to pick-up medication refills.
9:45am: Pharmacy says medication wasn’t covered by insurance and will cost $500.
10:00am: Drive home, call insurance, and request prior authorization for the medication. Call gets disconnected twice.
11:00am: Return to the pharmacy and apply for a “prescription savings card,” which gets me a $200 savings off retail pricing.
11:30am: Return home for lunch, following a strict new diet from the nutritionist.
12:15pm: After lunch, mix up a doctor-recommended elixir involving unsweetened applesauce, ground bran flour, and unsweetened prune juice. Taste it and throw it out.
12:30pm: PT appointment
1:45pm: Afternoon medications (including several topicals)
2:00pm: Return home and insurance medical claim forms from the previous week, as my physical therapist is cash-pay and doesn’t take insurance.
2:30pm: Research pelvic pain online and search for new providers, treatments, and medications. Call providers in neighboring states and discuss treatment possibilities. Make plans to see one of them, including the corresponding travel plans. Call the insurance company to request permission to go out-of-network.
4:00pm: Visit alternative medicine physician who administers lidocaine injections into my neck. Narrowly avoid fainting while receiving the injections and rest there awhile.
5:00pm: Stop by the grocery store to search for something that sounds good for dinner. I’m feeling nauseous again and return home empty-handed.
5:30pm: My husband gets home from work. We share our busy days.
6:30pm: Do my exercises/stretches while we watch TV.
9:00pm: Take a long bath.
10:00pm: Take my nighttime meds and do some constructive rest positions in bed.
10:30pm: Lie down in bed and apply a perineal icepack. Lights go out.
12:00am: I’m still awake and nauseated from my medications. The Lidocaine has dissipated in my neck, and it’s now sore at both injection sites, making it hard for me to get comfortable on my pillow. My abdomen and thighs are bright red and hot from the skin-rolling at PT today.
12:45am: I get a wave of nausea and grab my pillow. Stopping by the guest room on my way to the hall bathroom, I grab some blankets and make a nest for myself on the cold bathroom floor near the toilet. I position myself as comfortably as possible on my pillows upon the hard tiles, placing a cold washcloth across my face to ease the hot flashes. I turn on some soft music on my phone, and my dog wanders in and snuggles up with me.
2:00am: I’m still on the bathroom floor and am frantically chewing homeopathic ginger gum in an attempt not to vomit.
2:14am: Last time I see the clock before dozing off
6:45am: I wake up when I hear my husband’s alarm clock in the other room. I roll over and try to go back to sleep. He comes in to check on me and brings me back into our bedroom, tucking me back into our bed. He tiptoes around quietly while he prepares for work and kisses my forehead goodbye around 8:00am.
8:15am: I fall back to sleep.
9:00am: My alarm goes off. I have a doctor’s appointment at 9:45 and need to leave the house in 15 minutes.
“Occupation” isn’t a nice question. So stop asking it.
Being a professional patient is SUCH hard work, but it’s often a thankless job. People imagine you parked at the TV all day, catching up on leisure reading, and generally being lazy. I always hated answering the occupation question on intake questionnaires, and I wish providers would remove it. It always felt like they didn’t understand what it meant to be sick. I didn’t get to have an occupation, and that fact was something I grieved.
Rather than asking questions like “occupation” on an intake questionnaire, I have a better suggestion. Use a simple form for need-to-know information, but then sit down and have an actual conversation with your patient. Learn about their goals, how they spend their time, and their priorities. People in pain don’t often have the benefit of enjoying an occupation or a relationship or a past-time (some questionnaires even ask that!). So get to know them as people instead, and learn about what they hope to enjoy once they recover. Demonstrate your understanding of the complex experience of living in pain by being empathetic to it.
If you want help creating a practical, legal, and appropriate new client intake form, reach out to Erin at Jackson LLP! You can email her at firstname.lastname@example.org, and she would love to share her perspective with you – both as a patient and an attorney.
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