Confessions of a non-compliant patient

~ Carolyn Thomas

by Carolyn Thomas  ♥ @HeartSisters

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Consider this scenario, dear reader:  I’m lying in bed one Sunday evening, settled in to watch 60 Minutes for the next hour. But this Sunday is different from any other Sunday because I’ve had three new things to deal with during the past week that are utterly separate from my laundry list of daily cardiac concerns:

  1. 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).
  2. I’m using a new prescription ointment for a pesky patch of psoriasis on my left elbow.
  3. 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 60 Minutes investigative reporters 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.

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 emergency 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!)   See also: Why Patients Hate the C-Word .    As Kentucky cardiologist Dr. John  Mandrola wisely explains:

”    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:  First, There Was Compliance. Then, Adherence. Now, Concordance!

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 loveable 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 watermelon, the remote clutched in my cold bony hand, the light from the TV still flickering over hideously stained sheets, and a new 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”.  See also: The “New Normal” – and Why Patients Hate It

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 into the 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, all arriving at the same time and piled onto an already-full plate of exquisitely 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.

© Carolyn Thomas www.myheartsisters.org

This article was picked up as a guest post by The Center for Advancing Health’s Prepared Patient Forum.

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NOTE FROM CAROLYN:   I wrote much more about why we do or don’t follow doctor’s orders in my book, “A Woman’s Guide to Living with Heart Disease”. You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (use the code HTWN to save 30% off the list price).

Q: Have you experienced seemingly minor health setbacks that seemed to throw your ability to function right out the window?

See also:

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

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Published by Carolyn Thomas

32 thoughts on “Confessions of a non-compliant patient”

  1. I think you deserve a maple dip. Sometimes you just need to feed your craving! Meanwhile, I’m trying to stay away from the leftover Halloween candy…

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    1. Thanks for that vote in favour of maple dips, Tina!!

      I year ya about those Halloween candies. Before I retired, I used to think a solution to my lack of willpower would be to just bring the leftover treats to the office to get them out of my sight, until I learned of course that my colleagues had brought in all of THEIR leftovers too!!

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  2. I can’t believe all you have to cope with with your diagnosis. Just deciding what to do on a given day must take so much of your energy. I’m so sorry. One more chronic illness to know about. Thanks you for doing this blog which reflects how much care and energy you must spend on it. VERY impressive – I’m finding so much information I have never seen elsewhere.

    CPAP was pushed on my youngest daughter – until the physician who knew about NON-24 had her do a sleep study AT THE RIGHT TIME FOR HER, and proved conclusively she doesn’t need one!

    Regular sleep doctors push the things as the solution for everyone’s problems: yes, keeping their sleep clinics funded, and the money/? from the CPAP providers and drug providers flowing.

    OTOH, my eldest swears by it.

    One tool – a hammer – and everyone is a nail.

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  3. This article made me laugh and cry at the same time. You articulate the invisible burden of our disease or conditions, the quality of life and psychological/emotional side which certainly is more important than the physical.

    Somehow you wrote this while I stand at the same juncture as those above: my physician is recommending I complete a sleep test (I have to have another consultation with another doctor because the center where the sleep study would be completed is not affiliated with the center where the initial consultation was done, AND it is a 45 minute drive for me in good weather, AND I work, for heavens sake) and I don’t know that I would use a CPAP even if recommended.

    And now the new cholesterol recommendations: I am in the midst of trying to work with my statin intolerance (severe muscle pains that wax and wane and get worse with exercise) and was brushed off by a new cardiologist who told me that I just needed to be on high dose statins regardless. Regardless of what? Crestor put me in bed for three days and I am a tough chick. Now I feel I need to find another cardiologist.

    Not to mention the static I am getting every time I visit the doctor about my weight. Eat less, exercise more. Wait, how am I supposed to exercise more? I can’t take nonsteroidal anti-inflammatory medications because of my bypass. ARGH.

    My love and thoughts to you, Carolyn. Your articulation of your pain eases mine. We are not alone. ♥

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    1. Hello Dr. Anne – Your doctor’s advice seems to have ‘new doctor’ written all over it, yet my hunch is few other cardiologists would be keen to stop recommending statins. Did you read of the new study reported in the BMJ that compared daily statins with eating an apple a day? Seriously. Study authors called it a “Comparative Proverb Assessment Modelling study”! Conclusions: “A 150-year old health promotion message is able to match modern medicine and is likely to have fewer side effects”.

      Thanks for your kind words – hang in there!

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  4. Of course thank you for this, it made me smile & feel less crazy.

    When you are clinging to hope by the smallest finest thread, you feel so alone. It’s not that you don’t have family or friends, but you know everyone has their own burdens to carry & not everyone appreciates or recognizes you’re struggling. Some days everything seems impossible & it feels like nothing will ever change.

    You look around at healthy people & just want to scream ‘wanna trade places’? I continue to search for a way to find balance to contribute to more than health care costs. If you find the answer please share, I’ll take all the help I can get!

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    1. Glad this post made you feel even slightly less crazy. It is indeed a crazy-making scenario! And the only trouble with screaming at healthy people is that nobody ever wants to trade places with you, right? Take care, Kira.

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  5. Aw Carolyn:
    You seem to read my mind and write just the right blog. I am so weary of trying to keep on top of everything: pelvic floor disorder, fibromyalgia/chronic fatigue, life long anxiety, frequent bouts of bursitis in left hip, never ending very painful bone on top of left foot, hypothyroidism, meds for everything…and of course all the other stuff that just goes with plain old aging.

    Well, I keep asking myself: what’s the worst thing that can happen? Of course it would be another heart attack- and not surviving.

    The idea of going to a sleep clinic and being fitted for a CPAP machine is more than I can bear right now. I know I must do so soon though to help with these night terrors.

    Hmm…what are all those incredibly itchy spots on my back and hips…should I see about those too? Does it ever end? I wish I could remember when I felt healthy. I can be somewhat compliant but not 100%. It is just too exhausting.

    But for you – Saturday and all that goes with it…love and best wishes for a great day!

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    1. Hello Barbara,
      I stopped dead in my tracks (well, maybe that’s an unfortunate phrase – not DEAD certainly!) when I read your sentence: “I wish I could remember when I felt healthy.”

      That is a profoundly important reality for so many of us, and under-appreciated by many if not most of our health care providers. I know I used to feel perfectly healthy before 2008 (I have decades of my running photos to prove it!) but those old days do seem like forever ago.

      Thanks so much for your kind wishes about Saturday’s heart talk at UVic.

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      1. I don’t know whether I wish I remember when I felt healthy: it’s so long ago it might be too depressing.

        I know I had hepatitis A when I was in grade 10 and infectious mononucleosis in grade 11. Trouble is the mono kept recurring year after year until I was diagnosed with chronic fatigue syndrome and fibromyalgia, both considered to have been long-standing.

        I was in my thirties when I discovered that everybody doesn’t have a bad headache every day. Since it was normal for me, why would I bring it up? The neurologist I saw took an extensive history & diagnosed migraines since fairly early childhood. Then began the merry-go-round of drugs so I could become migraine-free, important because they were getting so bad I frequently had to leave work, and was generally in bed for two days because of them. At that time a new class of migraine drug was just onto the market so I was very hopeful. Unfortunately for me, it just worked for about an hour, and cost about $90 a pop.

        So one by one, I tried everything available, finally ending up with an old drug, Sansert/methylsergide. It worked the best, taken daily, whether or not I felt pain, but I had to take periodic “drug holidays”, when I would be off it for a set number of days. This guaranteed I would have “Status Migranis” during those times.

        Then it turned out that the Sansert had caused severe damage to my heart, requiring the replacement of one and years later a second major heart valve, forcing me to retire at age 47, which I’ve written about before. When I had my first valve replacement surgery, a new-to-me neurologist put me on an anti-seisure drug,Topamax, that works well, still, to virtually eliminate the migraines!

        I’ve now been on Coumadin/warfarin for over 13 years, with its attendant problems, because of my artificial valves. Raising my INR high enough eliminates the risk of clots forming on those artificial valves, as well as causing me to bruise and bleed easily. If my INR gets too low I have to self inject with preloaded heparin syringes twice a day until my INR is back into my (high) therapeutic range. I’ve learned the hard way that I get into trouble if I “put off” doing my INR. And I hate injecting the heparin! It hurts and leaves big sore bruises. My “burden of treatment” feels like it’s almost too much at times, but I know my survival depends on it. Usually it’s a no-big-deal routine, but sometimes I have a private pity party.

        Thanks for bringing up the urge to be “non-compliant”, Carolyn. I think we’d all like a little of our old or imagined lives back.

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        1. Thanks Jennifer for sharing a pretty powerful example of the “burden”. Sometimes I think we don’t necessarily need our old life back, but even a day or two or nine of just not having to THINK about illness.

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  6. Carolyn,

    Another spot on post!!!

    Torn rotator cuff, finally over nasty cold – not as much drama as before BUT had trainer work me extra hard today following your daughter’s theory 😉. Seems to be working!

    JG

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  7. First of all, thanks for your kind words awhile back. I’m slowly coming around.

    I just wanted to say that this blog, given the seriousness of everything you are having to deal with, had me laughing out loud with your graphic description of getting ‘prepped’ to watch Downton! Your humour is so contagious & even under such trying circumstances, you have a way of presenting things so well that we can all relate to.

    I’m really, really sorry that your knee is causing you such grief pain. Can’t be fun, that’s for sure, to say nothing of the expense of physio. I Hope you’ll be able to get through Saturday without too much discomfort.

    And what is Bates’ future??!!! And poor Anna?? Will Mary pick one of these suitors? Any man that can pick a mud fight amongst the pigs would be my pick of the crop & has my vote!!! Loving the plot this year. Just pure fun & in my opinion, a good tonic to end the week. A glass of red wine doesn’t hurt either!!

    I wish you well, Carolyn. Take care.

    Nora

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    1. Hahaha! Nora, you know you’re really ill when you can’t even bring yourself to care about Bates or Anna or that priggish little Mary, as therapeutic as Downton as a tonic may well be.

      Luckily, my very wonderful VIHA Extended Health coverage takes care of my physiotherapy fees, but you raise a good point for all those who aren’t covered and who cannot afford $60 a pop for each physiotherapy visit. So many people living with chronic illnesses simply cannot financially afford to have even one more thing on their list of treatment burdens.

      Thanks also for your good wishes re Saturday’s event (my 5th Annual Cardiac Café presentation on women’s heart health at the University of Victoria). I’m walking with a cane, but I’ll be back at physio tomorrow and hopeful that if I take it easy between now and Saturday, I’ll be just fine to stand and do my talk.

      Glad to hear you are slowly coming around, too.

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  9. Carolyn,
    My “heart” goes out to you . . . ouch.

    (The only thing I know to do is to thank all my body parts that are working correctly – and silently because they are rather over-shadowed by all the other parts that are calling for attention.)

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    1. Thanks Judy-Judith. That is actually good advice. Right now, in fact, I’m admiring my left knee which has never given me a moment’s problem. This also helps to explain why my daughter Larissa sometimes offers to stomp on my foot to distract me from other areas of pain. She’s so thoughtful . . .

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  10. This article hits me at just the right time. I have been “rebelling” against my CPAP machine big time.

    And the reason is that it was that “one more thing” that seems way too much for me to add to my health regimen: Managing multiple pills three times a day, insulin pump alarms, carb counting, pain management, keeping track of my BP, keeping track of my glucose, keeping track of my abdominal symptoms. And a new one: keeping track of my food for the dietician.

    Nah! No! says me lately. So, for now the CPAP goes.

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      1. So interesting – yet not surprising. We know that up to 83% of people using CPAP (Continuous Positive Airway Pressure) are not using this therapy as directed. According to this Up To Date link: “Even one night without CPAP may mitigate the benefits of CPAP therapy, which include fewer apneas and reduced daytime sleepiness, and improvements in daily activity, quality of life and hypertension.”

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        1. I used the C-PAP for months with no discernible difference in my daytime exhaustion. I’m now using a mouth appliance with no discernible difference in my exhaustion. It’s pretty well documented that some sleep disorders are not because of apnea but because the brain waves patterns – deep sleep- are off.

          I’m pretty sure my brain waves must not be waving nighty-nighty as they are supposed to.

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  11. Interesting reading that I am sure many can relate to!

    Health setbacks seem to be a part of my life lately. Already diagnosed with dilated cardiomyopathy (with LV compaction) and sporting a pacer/ICD, only to have pain and fatigue throughout my body. Testing for Lyme disease came out positive for sjogrens, minor lupus and possible RA (mixed connective tissue disease).

    Okay, so now a new Dr. to see (rheumatologist). Just when you think you have been through enough, any and all meds prescribed, I have shown an allergic reaction to! Anti-inflammatories that are prescribed for these reactions are unusually causing these reactions!!

    So now off to yet another new Dr (allergist) who is trying to figure out common ingredients in the making of these pills (compounds) that I may be allergic to!! So as for functioning…. out the window!!

    I continue to keep positive that one day, they will figure it all out!! Thanks for listening. Love reading your blogs!

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    1. Good grief. You have been hit with far more than your fair share, June! Any one of those individual diagnoses would be enough to knock the average person flat – why do some people get buried under so many of them? I wish you and your doctors good luck in solving the mystery.

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  12. Excellent piece, Carolyn! It speaks to the wider issue that for those of us who try to be health-conscience and informed, it is hard to stay on top of all the “should’s” and “must do”‘s of everyday life.

    Just to add to the burden, science keeps on changing its advice it seems. With new discoveries and studies, what used to be good practice becomes wrong and so you get discouraged that you are actually doing the “right thing”.

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    1. Good point, Maxine. Advice does seem to change (just look at the controversial new cholesterol guidelines – doctors who religiously monitored their patients’ LDL numbers were suddenly told to ignore target numbers in favour of now looking at overall lifestyle risk factors instead. Just like that!)

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  13. I love the image you paint of yourself, all “tugged in” and fully adhering to all your health recommendations. How easy it is to relate to the daily reminders of all the “things we need to do” to remain healthy and compliant to the doctors’ orders.

    It quickly becomes a complicated balancing act often times filled with overwhelming hopelessness and just a pure wish for some normalcy in everyday life. Thanks for starting my day off with a smile and helping me recognize that we all struggle to remain compliant to recommendations to be “healthy.”
    Sharon

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