Caution: swear words below
I am in no mood today.
I call bullshit on the American healthcare system. And I am fucking frustrated with chronic illnesses. I am beyond frustrated. I am more than tired. There are no words in the English language that can accurately describe how thoroughly pissed off I am by it all.
What set this off? It may seem relatively minor to most. But I need test strips for my glucometer. You know. The ridiculously expensive little strips that I bleed onto to check whether or not my insulin intake is what it should be. Basically a lifeline I will need until there is a cure for diabetes.
While I’ve struggled with diabulimia for years, these things have become my worst enemy. They trigger me and make me hate myself because the number they come up with turns into a judgment on myself and all of my failures for not “controlling” this monster. This fucked up autoimmune disease bastard that really does what it wants no matter what I try to do but that the rest of the world thinks I can tame. Diabetics may be able to manage diabetes but for a Type A perfectionist with a bent toward unhealthy focusing on numbers already – in pounds in a scale and carbs in my food and calories lost at the gym – manage isn’t good enough.
So with my diabulimia I said fuck it. The blood sugars can’t ever be controlled perfectly enough and if I don’t take insulin I’ll always know they’re high and I’ll very a side benefit of loading weight.
These days I’m really trying though. I’m trying to take more insulin and be curious about where my blood sugars are. It’s a HUGE step. And it means I will need a refill on test strips.
Imagine my consternation then when I call my primary care physician to ask for a prescription and find out that she is away from the office for 5 months and I’ll have to come in to “establish a new relationship” with the doctor covering her patients simply to get this prescription which shouldn’t be necessary in the first place.
An appointment with a PCP may not seem like a huge deal for most, so why not make the appointment, go in, get the script and move on. Perhaps a small inconvenience for most, relatively painless. But I’m a patient with chronic illness.
Never mind that test strips shouldn’t need a prescription. Never mind that they are unreasonably expensive in themselves. Think about the amount it takes out of my disability budge. By the end of the month, if I’m lucky I’ll have $3 to my name out of the $890 I get. I’ve been known to count pennies at the grocery store rather than use coinstar because I need those extra few cents.
Then think about what 1 more doctor is in my daily life. I am constantly seeing doctors. I have 2 neurologists, a gynecologist, a podiatrist, a spine surgeon, a pain management socialist, a psychiatrist, an occupational therapist, a physical therapist, a rheumatologist, an ophthalmologist, the central clinic at the homeless coalition, and my therapist. I desperately need to see a gastroenterologist. I’m in between endocrinologists (who would normally prescribe these things). And every time I see a specialist I feel like I get a new diagnosis and a new doctor added to the list.
And given my history of trauma, I like to choose my doctors. I hate being told I’ll just see someone randomly who will likely want to do a physical when I hate being touched. So just passing me off to someone I don’t know… Not cool.
Coordinating care between all of these providers (most of who are already in the same system simply to make it easier for me) is a full time job. The PCP adds nothing to my care other than an occasional antiniotic and even then I try to stay away from those and for referrals. The one time I need them to write a script for something that shouldn’t need one at all, I have to add yet another appointment to my packed calendar.
While my peers schedule lunch dates and ski weekends, my days are filled with wondering if I’ll have enough time to get 2 visits in the same day (usually I can’t). Add the pharmacy in, and my chronic life had become a full time job.
That’s what chronic life is though. All those little things that add up. The never ever getting a break, not for one second. For me if it’s not a high blood sugar making me guzzle water and pee every 5 seconds, it’s my hands barely functioning because if the arthritis and I can’t use my arthritis glove because I need to wash it (I only have the one. Can’t afford 2), or the thoughts of suicide that won’t abate, or the pain of endometriosis, or a panic attack from a random trigger (sometimes a panic attack triggered by a provider), or constant headaches, or neuropathy, and on and on. It’s the counting out 15 pills at night on a good day. And the making sure I have food in my purse to treat a low blood sugar. It’s the velcro on the special carpal tunnel brace not velcro’ing anymore. It’s a prescription called in incorrectly when I’m already at the pharmacy and have to wait on hold for 20 minutes before talking to a medical assistant to get it sorted out. It’s the 10 phone calls and 5 emails and 3 faxes to get a billing issue sorted that’s if the issue is simple). It’s the constantly not feeling well and doing an internal scan to figure out what is wrong this time – or maybe it’s new and if it’s new when do I raise the issue to a provider and which provider. I could go on…
Then think about the stress I already face in seeking housing, affording food, making sure my car doesn’t fall apart. It’s the everyday frustrations that normal people deal with plus poverty plus illness.
I want to do more in life – have a job, advocate to make policy changes so no one faces the same frustrations and limitations and struggles. But how can I when I’m mired in the morass of this inanity? I already can barely function physically and mentally. Getting out of bed takes monumental effort. Talking insulin is harder than passing a bill through Congress as the committees in my head meet to discuss the pros and cons of drawing up 1 more unit and the eating disorder thoughts having too much influence most days.
These hurdles are a BFD because of the drain on my already really fragile mental and physical health. I’m already wired to fall apart, my window of tolerance is unduly limited. Add even one more thing and I just can’t…
Nor should I have to. Nor should anyone have to.
At the end of the day, I know I’m lucky in many ways to have many of these problems. I’m lucky to have any access to test strips. I’m lucky to have the ability to see so many specialists. I’m lucky I still have the wherewithal to navigate the system (though this is not always the case). I’m lucky that I’m not currently living on the street or out of my car because I do have people who care about me.
Still – LIFE IS A BITCH if you have chronic illness.
And there is no goddamn reason it should be made any harder.
Today I’m beyond my limits for the asinine American health system and the shittiness of chronic life. I want to kick the system and these illnesses in the shins like they do to me every single day. But all I can do is have this brief tantrum and then get back to dealing with my reality.
To read more reasonable accounts of similar frustrations, I encourage you to read these posts:
- Good Eggs versus Goliath by @verylightnosuga
- A Personal Orchestra – beautiful music or discordant noise? by @seastarbatita