A Full-Time Job

My grandma was healthy as a horse until age 86. Never had a cold. Never had the flu (never got a flu shot either). Used to make fun of us when we had headaches. She had three kids and did laundry by hand and was absolutely indestructible, health-wise. Until she wasn’t.

I think the first thing was the compression fractures in her back. It might have been the appendicitis. There was a tumor biopsy in there somewhere, too. By the time the dementia kicked in, with its attendant falls and forgettings, she’d been in and out of hospitals more in one year than in all the previous years of her life.

My mother, her caregiver, made doctor’s appointments and drove her there. She argued with physicians and fought with insurance companies and spent the vast majority of her time trying to untangle what happens when Medicare and insurance and public and private funding all collide with the urgent need to find a spot in a nursing home that isn’t an infested hellmouth in the next 24 hours.

That’s how it happens, if you get lucky, blessed with bulletproof genes and the type of orneriness only found in people who survived a Depression and a World War. If you never get sick, you get sick suddenly and all at once, and you find yourself faced with a goddamn horror-movie-level hedge maze.

My mom asked me once on the phone, relating some completely ridiculous process she’d had to fight through in order to get some laughably basic procedure. “What do people do who don’t have someone to make all these calls for them and go through all this?”

They die. Maybe not directly, maybe not right away, but eventually if they don’t get the test or see the doctor or believe what they’re told the first time instead of asking for a second opinion, they live in pain they don’t have to live in, and they die sooner than they have to.

I once spent an entire bus ride furiously tweeting at my insurance company because they’d denied me a medication my doctor said I needed. A supplemental insurance company didn’t supply them with a number, and the supplemental needed the doctor to approve it, which led to a psychotic game of telephone being played on the 91 bus between me, two insurers, and a doctor’s office that closed in 10 minutes. Hence the tweet-yelling.

What do people do, that can’t or don’t know how to harass their corporate carriers into getting a customer service rep on the line?

I used to work hourly, which meant any time I took off work to go to a doctor (hours 9-5 ONLY, except the one day they benevolently stay open til 6 and that day’s booked through 2047) or I needed to make follow-up calls that could lead to being on hold for 30 minutes or I had some bizarre fasting requirements or had to drink noxious medications, I didn’t get paid for that time.

What do people do, that can’t afford to take that time?

They die, too. Even if they have insurance and doctors. If they don’t have sick time, or child care (I took my kid to pelvic exams a couple of times, so fun), or people they can call on to help out, or if they have dependents they can’t leave, they die, too, sooner than they have to or in more pain than they need to suffer.

This isn’t surprising: 

This approach leads to patients having to attend endless appointments with different specialists and being placed on a cocktail of different drugs.

One of the researchers, Dr Lynne Corner, said: “It is a full-time job being a patient.

“You can have five different appointments, on five different days with five different teams. That’s hard for patients and hard for their families.”

The story’s about the NHS, but almost everyone I know with any kind of chronic condition, treatable or no, has the same type of story. I have a friend who carries a binder with her when she goes to the hospital: tabs for various specialists, tabs for medications, etc. because none of these people can talk to each other, and they all rely on the patient being with-it enough to keep track of all this crap.

Which, when you’re sick, or you’re old, or you’re poor, or you’re distracted, is a hard damn thing to do. People think we need a system for when your health goes wrong, and we do. But we also need one for when your health isn’t that bad and you just need to get better, a system that doesn’t involve you having to learn Excel at the age of 90 just to manage your meds.