Consider this scenario, dear reader: I’m lying in bed late one Sunday evening, settled in to watch Downton Abbey for the next hour. But this Sunday is different from any other Sunday because I’ve had three new things to deal with during this past week that are utterly separate from my laundry list of daily cardiac concerns:
- I’ve been having physiotherapy three times a week because I twisted my right knee (same one I had knee surgery on seven years ago).
- I’m using a new prescription ointment for a pesky patch of psoriasis on my left elbow.
- I’m wearing a brand new acrylic mouth guard to bed every night that my dentist has just made for me to help treat a longstanding jaw alignment problem.
So. Here I am lying in bed that Sunday evening as our story unfolds . . .
My right knee is propped up with ice packs on two pillows, swollen and hurting like hell despite all the physio and non-weight-bearing and anti-inflammatories I’ve been popping all week.
My left elbow is tilted skyward and carefully propped on another pillow, freshly ointmented and exposed to the air for at least an hour as directed. My pharmacist has previously warned me that this new psoriasis ointment is very sticky and will permanently stain fabric, so I should use sheets that I “don’t care about” at night. I don’t have any sheets I don’t care about. I care very deeply about all of my sheets.
My new mouth guard is tightly wedged into place over my upper teeth, feeling awkwardly foreign and making it impossible to speak intelligibly even if I still had the will to live.
I feel utterly miserable. I simply cannot bear this. I’m done. It’s all just too much. I am no longer even remotely interested in what the toffs on Downton Abbey are up to this week.
I know what you’re thinking: Oh, come on, Carolyn! A pulled ligament, a sticky ointment, and a little mouth guard are hardly worth making such a fuss over!
And of course, you would be right about that. To the average person who enjoys the luxury of healthy privilege, not one of these issues should be more than a blip on one’s radar.
But sometimes, when we’re barely hanging on by our fingernails at the best of times, it can take only a modicum of additional stress to propel us right over the edge.
That Sunday is also the culmination of a week in which I’ve somehow “forgotten” to take my fistful of cardiac meds two or three days in a row.
I’ve also “forgotten” to monitor my blood pressure readings as I’m supposed to do each morning before breakfast.
Worse, I seem to be craving one or possibly five gooey Tim Hortons maple dips. Now, I haven’t actually tasted a maple dip since approximately 1998, but this week I can’t seem to stop thinking about them. Why, I want to cry out in despair, doesn’t Timmy’s provide home delivery for desperate shut-ins like me?!?
I’ve been unable to participate in any of my regular daily exercise pursuits because of my knee, but I’m in too much pain to even think about trying any upper body weights or stretches in the meantime. I do not want to!
And I just don’t care anymore.
I’ve become a non-compliant patient. (There! I said that utterly cringe-worthy word!)
“Non-compliance” is terminology that many patients despise. As Kentucky cardiologist Dr. John Mandrola – who prefers using the slightly less patronizing “non-adherence” – wisely explains:
“Non-compliant has fallen out of favor. Doctors used to say patients that did not follow a prescribed plan were not compliant. But this kind of harsh language implies a paternalistic condescending attitude towards the patient.”
Indeed it does, Dr. John. Sticklers might insist that the word “adherence” – sometimes used to replace the paternalistic word “compliance” – is a different animal entirely. While compliance means taking medication as directed, adherence means remaining on a prescribed drug therapy. Whatever . . . Both words mean not doing what your doctor would really like you to be doing. See also: Why Patients Hate the C-Word
My own non-compliance that evening continues with a deliberate decision on the following evening to give the hateful mouth guard a night or two off. On waking the next morning, I’m surprised to find that I’ve slept through the whole night for the first time in well over a week. Until then, I’d been blaming this awful knee pain for waking me up several times a night).
There’s not much I can do about that still-painful knee, but I’m thinking that the mouth guard strategy works so well I decide to also nix the evil ointment the next night so I can just enjoy the bed linens that I’ve never truly taken the time to appreciate as much as I do now. This time, I tuck my left arm completely underneath the down quilt, and sigh happily as I caress my lovely sheets with a bare naked elbow, newly unafraid.
Having two restful sleeps in a row somehow makes it possible to remember both my meds and the blood pressure monitor the next morning.
Maybe, just maybe, I won’t die of intractable misery after all, my life-saving cardiac meds untouched, my knee puffed up like a melon, the remote clutched in my cold bony hand, the light from the TV still flickering over hideously stained sheets, and an acrylic mouth guard that the paramedics who discover my corpse will find impossible to pry off.
Having narrowly escaped death-by-stupid-mouth guard, I now feel a wee bit like Scarlett O’Hara staring defiantly into the future as I declare hopefully that “Tomorrow . . . is another day!”
But before we fade to black, let my cautionary tale help illustrate what Dr. Victor Montori and his Mayo Clinic-based team refer to as the patient’s “burden of treatment“. Their innovative work on Minimally Disruptive Medicine suggests a care model that acknowledges – as few other health care providers do – the relentless “burden” that so many patients live with every day, particularly if they have more than one chronic diagnosis.
Nothing says “burden of treatment” quite like non-stop daily reminders that what you’re now going through one damned day after another is merely dismissed as being your New Normal.
In between reminders, I also live with debilitating daily symptoms of coronary microvascular disease - chest pain, shortness of breath and bouts of crushing fatigue, interrupted only by my nitro spray, several rest periods, and moments of panic wondering if today is the day I’ll need to call 911 and go back to hospital.
Most days, I have learned to function pretty well. But take a few unexpected health challenges, no matter how minor they may seem to others, arriving at the same time and piled onto an already-full plate of carefully-balanced To Do list tasks, and you have an explosion of overwhelm that looms larger than the average healthy person could even imagine.
The combination of chronic illness and vigilant expectation of that c-c-c-compliance leaves very little wiggle room for even One More Thing to strike us down, never mind a painful joint or sleepless nights.
And as Mayo’s Dr. Victor Montori once explained, both the defiant patient who deliberately ignores doctor’s orders and the overwhelmed patient who simply lacks the capacity to keep coping with doctor’s orders are often viewed by physicians with the same kind of covert disapproval.
© 2014 Carolyn Thomas www.myheartsisters.org
This was picked up as a guest post by The Center for Advancing Health’s Prepared Patient Forum.
- The new country called Heart Disease
- “To just be a person, and not a patient anymore”
- ‘Healthy Privilege’ – when you just can’t imagine being sick
- “Everybody has plans ‘til they get punched in the mouth.”
- Living with the “burden of treatment”
- Why don’t patients take their meds as prescribed?
- Looking for meaning in a meaningless diagnosis
Q: Have you experienced seemingly minor health setbacks that seemed to throw your ability to function right out the window?