“To just be a person, and not a patient anymore”

4 Nov

by Carolyn Thomas @HeartSisters  ♥ November 4, 2018

New Jersey oncologist Dr. James Salwitz, in his blog post called Why Is The Doctor Angry?, tells the story of the day that one of his patients had become very ill. Instead of calling Dr. Salwitz, however, his patient emailed a doctor 3,000 miles away in California as he became sicker and sicker. The California doctor forwarded the email back to Dr. Salwitz, who immediately sent his patient to hospital with multiple system failures. Dr. S said that he felt angry about his patient’s behaviour, explaining:

“Did I look him in the eye and tell him that I was upset, that he had neglected his own care by not reaching out and in doing so he violated the basic tenants of a relationship which said that he was the patient and I was the doctor?”

“Did I remind him what I expect from him and what he can expect from me?  You better believe it – I was really pissed!”

My own question to Dr. Salwitz was: “So, did you ever find out from the patient WHY he did not reach out to you?”  

Dr. S answered my question like this:

“He was in remission and at the end of treatment. I think he was hoping to move on from the burden of medical care and just be a person and not a patient anymore. His timing was nearly fatally off.”

Although feeling understandably “pissed”, this doctor appears to have a genuinely astute understanding of what could have possibly motivated his patient to behave as he did – encapsulated in his sense of this man’s profound need to “just be a person and not a patient anymore.”

Just be a person, and not a patient anymore.

How many times, I asked myself while reading about this patient of Dr. Salwitz, have I too wished in vain for precisely this? 

How often do any of us living with the relentlessness of chronic illness and debilitating symptoms and drugs and fear and treatments and medical appointments and tests and hospitalizations and exhaustion dream longingly about life as it used to be, before we became patients?

I recall an incident that happened a few weeks after my heart attack. Still reeling from a shocking diagnosis, ongoing symptoms and accompanying sky-high anxiety, I stormed around the apartment one day in a fit of pique, gathering up all my get well cards and bouquets of flowers. I trashed the lot of them.

I did not want any reminders in my home that some kind of invalid lived here. I was sick of being sick, and I wanted my old life back, thank you very much.

I wanted to just be a person, and not a patient anymore.

(It didn’t work, by the way. I was still a heart patient, albeit now in a tidied-up apartment).

At about the same time, I met a man in my cardiac rehabilitation group who had just passed the one-year anniversary of his quadruple bypass open heart surgery. He confided to me one day at rehab that he had recently decided to stop taking all of his heart meds. On top of that, he had started smoking again.

I remember looking at him as if he had just sprouted two heads.

“Why don’t you just jump off a cliff then and get it over with?” I wanted to scream at these suicide-on-the-installment plan choices. But it turns out that he is not alone.

A recent Canadian study(1) on over 7,500 survivors of cardiovascular disease in 17 countries found that:

  • 18 percent continued to smoke
  • 65 percent did not exercise
  • over 60% did not improve their diet

But now, five years later, I think I get what those survivors (and my cardiac rehab buddy) were going through.

The Diabetic’s Paradox, Thomas Goetz‘ famous article in The Atlantic, reported on a study that described the reality of decades of self-tracking among those living with diabetes, many who say that they “loathe” keeping daily track of their illness:

“In the case of diabetes, the distaste falls into three categories: Self-monitoring for diabetes is an unremitting and unforgiving labor; the tools themselves are awkward and sterile; and the combination of these creates a constant sense of anxiety and failure.”

See also: Living with the “burden of treatment”

Overburdening a patient can lead to what researchers call structurally-induced non-compliance with treatment recommendations, in which it becomes progressively harder for patients – especially those living with multiple chronic diagnoses – to meet the demands that their caring – and increasingly frustrated – physicians inadvertently place upon them.

Meanwhile, back to Dr. James Salwitz and his article:

The practice of medicine for most doctors is fueled by a passion to help. Just as we expect a lot of ourselves, we darn well expect a lot out of our patients.”

And that sentiment, in an odd sort of way, may well be the key to understanding the under-appreciated differences in health care goals between the physician offering the best of care and the patient who seems to be dismissing that offer.

This is particularly problematic in chronic care, which in terms of human history is a relatively new concept: a century ago, our average lifespan was about 50 years. Our ancestors tended to die from acute health crises involving infections, epidemics, childbirth or horrible industrial accidents. Few lived long enough to develop the chronic illnesses of today.

We all know that following doctor’s orders is a clear expectation of being a “good patient“.  Not doing what your doctor recommends  – or not even reaching out to your doctor when you’re in serious trouble – just seems crazy, doesn’t it?

But maybe, just maybe, as doubtful as this possibility might seem to our physicians, it happens when the patient just wants to be a person again.

(1) Teo K et al. “Prevalence of a healthy lifestyle among individuals with cardiovascular disease in high-, middle- and low-income countries: The Prospective Urban Rural Epidemiology (PURE) Study” – Journal of the American Medical Association. 2013 Apr 17;309(15):1613-21.
(2) Sandeep Vijan. “The Burden of Diabetes Therapy” – Journal of General Internal Medicine 2005 May; 20(5): 479–482.

See also:

.Q: Have you experienced that urge to “just be a person, not a patient anymore”?

 

 

NOTE FROM CAROLYN: I wrote much more about becoming a patient in my book, “A Woman’s Guide to Living with Heart Disease” . You can ask for it at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from Johns Hopkins University Press (and use the code HTWN to save 20% off the list price when you order).

See also:

 

27 Responses to ““To just be a person, and not a patient anymore””

  1. Kristina J. December 5, 2018 at 5:00 pm #

    I understand this completely. At 29 years old I was diagnosed with peripartum cardiomyopathy after having my baby girl. Since then it has been nothing but doctors appointments and cardiac rehab. All this while still working full time, going to school for my Masters and being a full time mom.

    I just want to be normal again. I take my meds regularly like I am supposed to but it is so strenuous going to rehab those few times a week. I really want to stop going but I know that every little bit I do helps. I’m really tired of being a patient.

    Liked by 1 person

    • Carolyn Thomas December 6, 2018 at 4:51 am #

      No wonder you are tired, Kristina! You bring up such an important point for women diagnosed with PPCM: you not only have to recuperate from the physical and psychological shock of becoming a heart patient at a ridiculously young age, but – unlike the majority of cardiac patients – you also have to be responsible 24/7 for this precious little baby (along with everything else – you might want to rethink how you may postpone some of the To Do items on your overwhelming list).

      But you’re so right about cardiac rehab: although it may feel like just one more burden you have to cope with right now, cardiac rehab won’t last forever, but the benefits to your heart (and your mental health) will endure. You are certainly not alone – now go cuddle your baby girl… Best of luck to you.

      Like

  2. AndreaR November 6, 2018 at 8:14 am #

    Incredible story – the power of advocating for ourselves:
    I HAD A HEART ATTACK ON THE WAY TO MY WEDDING

    Liked by 1 person

    • Carolyn Thomas November 6, 2018 at 3:02 pm #

      Holy moley! What a story! There’s no ‘good’ time for a heart attack, but being in a plane over the Gulf of Mexico is probably one of the worst! What really struck me in this must-read story is how well this woman did advocate for herself during a cardiac crisis (as she said about trusting one’s instincts: “I asked someone to land an entire airplane for me not knowing if something was really wrong. It’s your life and you have one chance at it!”)

      I was thinking as I was reading this that everything I did wrong on a plane during my own heart attack, she did right. She helped to save her own life…. And lots of good basic info in her story too, from family history (her Dad had a heart attack at 36) to heart attack symptoms, to cardioprotective ways to help yourself stay heart-healthy in the future.

      Like

  3. Josundercurrent November 5, 2018 at 4:57 pm #

    Thanks for your post Carolyn. Finding the balance between person and patient is a tricky one and I often find myself pushing back against the medical system because I simply need a break from appointments and treatments.

    When attending rehab for a neurological condition last year, I wrote myself a healthcare manifesto to help me to identify my priorities, values regarding my health and well-being. I have since used this to guide my decisions around what treatments and therapies I engage in. On reflection I decided to quit the rehab program because I was not honoring my Self and my needs by attending.

    I had been placing the Doctors’ and therapists’ priorities above my own. Their priority was full recovery- but the reality is that will not happen for me. Declaring this to myself was liberating and helped me to accept the realities of my new and different life – now I am focusing on adapting to life with chronic illness and disability rather than simply focusing on recovery or a cure.

    I only wish I could explain this to the Doctors!

    Liked by 1 person

    • Carolyn Thomas November 5, 2018 at 7:15 pm #

      Hello Jo – I liked the idea of your healthcare manifesto so much that I looked it up on your blog (Readers! You can find Jo’s manifesto here ). For example: “Remember that exercise isn’t a chore if I am doing things that I enjoy and that have meaning and value to me.” I love that!!

      Your comments about ‘full recovery’ being the doctors’ and therapists’ priorities reminds me of the concept of “Minimally Disruptive Medicine” (developed by Mayo Clinic’s Dr. Victor Montori). Take a look – I think the concept might resonate with you…

      Like

    • Brandea Scott-Vessel November 14, 2018 at 1:37 pm #

      I love this… what is in the manifesto? I think the most important step in going through illness is to be clear in what it looks like on the other side, not just following someone else’s dictate of what you should do. You seem like you handle it in a healthy way.
      Thanks for sharing,
      Brandea

      Like

      • Carolyn Thomas November 14, 2018 at 8:03 pm #

        You can find a link to Jo’s manifesto in my response to her above…

        Like

  4. Pamela November 5, 2018 at 1:25 pm #

    Very interesting. My Takotsubo was Feb 2018…but I have other chronic problems…requiring daily routines. Pleased I have this help available on one hand, but get tired of it on the other. Often want to just be ‘normal’, but then think of others who don’t have assistance available.

    It’s not always easy being ‘the patient’, and having to wait for results, appointments, opinions etc etc.

    Thank you for this site.
    Best wishes to those recovering from heart surgery etc.
    Pamela

    Liked by 1 person

    • Carolyn Thomas November 5, 2018 at 7:34 pm #

      Hi Pamela – Takotsubo (aka “Broken Heart Syndrome”) is a tricky condition, often mistakenly viewed in the past as ‘no big deal’ – which is certainly not true!) That coupled with other chronic illness diagnoses – well, no wonder you sometimes feel like it’s “not always easy being ‘the patient’,” right?)

      Like

  5. Robin Vetia Hodges-Petruchyk November 5, 2018 at 1:07 pm #

    Hi Carolyn,
    Being a patient doesn’t bother me. I’ve had allergies and other problems most of my life. They took a break between the age of 18 to 27 with no problems and I stopped seeing all doctors. Then my BP spiked to an uncontrollable level, it took 3 years for my doctor to bring it under control. That was when I started taking beta blockers and heart meds because my body wouldn’t respond to other meds. Whenever my PCP would give me 6 months between appointments, something would flare up – My childhood ulcer kept coming back and they didn’t know why, to advanced osteoporosis. The final leg of this game has been my heart but I’ve never felt like a patient.

    I see hospitals and doctors as a place I must go to keep going. I make a deal with God every night, I don’t ask him for a miracle. I just say I have something to do tomorrow even if that something is laying on the couch watching TV. So sometimes I’m tired or I just don’t feel right but I smile and thank God for being here.

    There is something worse then being a patient, that’s being dead.
    Just saying,
    Robin

    Liked by 1 person

    • Carolyn Thomas November 5, 2018 at 7:36 pm #

      Hello Robin – there’s always something worse than what we think is already the worst, isn’t there?

      Like

  6. Kelly Kathleen Francis November 5, 2018 at 6:12 am #

    Yes, this is how I feel exactly. I took Cardiac Rehab at Sunnybrook for 6 months. I continually felt like I did not belong there. I am 51 and had 2 stents put in a year ago today. While I wouldn’t think of not taking my meds, I do feel that the requirements for exercise for a person still working full-time are ridiculous. I know that it will help me, but I want to feel normal. I have cut back on salt and I do eat more chicken than beef now and I feel like that’s all I can do at the moment.

    I totally get what you are saying in this article. I too, just want to feel normal and carry on as though I don’t have heart disease. Well written as always! Thank you for the great articles.

    Liked by 1 person

    • Carolyn Thomas November 5, 2018 at 6:43 am #

      Hello Kelly – Happy Heart-iversary today! I’m so glad that you did 6 months of cardiac rehab. Many studies have shown that doing that means your risks of another cardiac event are already significantly improved. Looks like you’re also taking other steps to help yourself too – all good. Every small step helps, and sometimes we’re more willing to take a new step than at other times. I think part of the problem for many of us, post-cardiac diagnosis, is that we’re suddenly presented with a big long list of required changes, all at once!

      But some of those recommendations (e.g. meds, exercise) are more cardio-protective than others on that long list. You may be surprised to know that regular exercise, for example, has been shown to be even more cardio-protective longterm than having stents implanted! Stents do not prevent heart attacks, they only address symptoms, whereas exercise affects every cell in the body, every day. And as cardiologist Dr. John Mandrola likes to say, “You only have to exercise on the days you plan to eat!”

      My intention in writing this post is to share a common emotional response that heart patients often report; I would never want anybody reading this to interpret this as suggesting that heart patient should “carry on as though I don’t have heart disease.” Even though we don’t WANT to be patients, the reality is that we are. No wonder we miss those good ol’ days when every decision choice didn’t seem so overwhelming. But every choice we make WILL have consequences. We’re free to choose every day, and some days are harder than others to make those choices.

      Like

  7. queenmumquipsandquotes November 4, 2018 at 6:31 pm #

    I was born a “patient” with a cleft lip and palate and spent many days with doctors and hospitals growing up. I overcame these days fairly well. Infertility was my next challenge with more tests and medications.

    At 50, I was diagnosed with lupus. It was in remission until I developed hypertension and was placed on a CCB (calcium channel blocker) which caused me to develop DILE–drug induced lupus. I became very drug shy after that experience. The recent microvascular heart disease has been the hardest by far.

    The medical odyssey of the past 3 years had me seeing over 20 doctors– each with their plan, tests and diagnoses. I had to retire from my much loved career as a mental health counselor. Finally a MET-Stress test gave the doctors my diagnosis. The meds to treat this have made me feel more like a patient and less like a person.

    If one more person asks me if I am enjoying my retirement . . . Not what I planned. So glad to find Heart Sisters and your great book.

    Liked by 1 person

    • Carolyn Thomas November 4, 2018 at 9:34 pm #

      I’m glad you found your way here, but I wish you hadn’t had to endure everything you have gone through in order to do so. I can relate to your forced retirement due to MVD (my own diagnosis too) and it was all about choice: none of us signs up for unwillingly leaving a career we love, especially when all we desperately want is to feel “normal”. Good luck to you…

      Liked by 1 person

  8. Catnip Blog November 4, 2018 at 12:05 pm #

    Patient and Person . . . they long ago merged into one.

    Liked by 2 people

    • Carolyn Thomas November 4, 2018 at 2:52 pm #

      Interesting you should say this, Judy-Judith. The other day I was interviewed by a reporter who asked if I objected to being called a “patient”. I thought about this question, and replied that, while I rarely if ever would introduce myself in public as a heart patient, I DO introduce myself as a patient whenever speaking to a group of other patients – simply to demonstrate credibility….

      Like

  9. Sharen Sleater November 4, 2018 at 9:33 am #

    My Mother, diagnosed with vascular Dementia, AFIB, and congestive heart failure, began not taking her meds. She was 87/88 at the time. Because she and I always had a contentious relationship, I had to tread lightly so I would not alienate her. I had a conversation with her doctor about her not taking her meds and asked about it.

    I asked if, at this stage of life and illness, would it make a whole lot of difference to her life span. He shook his head no. I needed to be able to go to her house very often to see to her needs, and I live 35 miles from her. A week after her 88th birthday, she passed away by herself at home. I have felt as though I failed her by not pressing her further to take her meds, but she did not want to.

    Liked by 1 person

    • Carolyn Thomas November 4, 2018 at 2:49 pm #

      Oh, Sharen. Feeling like somehow what you did or didn’t do may have contributed to your mother’s deterioration is awful. But the one thing that really struck me about your story is that her own doctor himself believed that strict adherence to her meds wouldn’t really make a difference at this stage one way or the other. And becoming the ‘police officer’ in charge of nagging one’s mother to follow orders is hardly ever effective, and, worse, can affect the relationship for both parties! In our own family’s case, it was made 1,000% worse when dealing with a parent with dementia. I have to believe that, as adult children facing such circumstances, we are doing the very best we can with what we have…

      Like

  10. Sara Twycross November 4, 2018 at 8:43 am #

    Gosh I can relate so much to this. I often just think I’d love to be just a Person again. But I have always said that as I have had my condition from birth, in a sense I have had it easier than someone who was has been just a person before.

    I have also been extremely lucky with my cardiologists and their understanding of this. And they have left me on a lower dose once or twice so I could have a “quality of life”, his words. Unfortunately it was short lived and eventually had to back up to ironically be able to do that bit more.
    Hugs
    Sara

    Liked by 1 person

    • Carolyn Thomas November 4, 2018 at 2:42 pm #

      You raise such an interesting point, Sara – there is indeed a difference between those who were diagnosed in infancy, and those who grew up healthy and THEN developed a medical condition later in life (thus prone to constantly comparing one’s pre-diagnosis life with the post-diagnosis life – rarely ever a positive experience! ) I wonder if this is true even with very serious and/or rare conditions diagnosed at birth…

      Like

  11. Meghan November 4, 2018 at 6:57 am #

    OMG Carolyn, I resonate with these feelings just about every day!!! And my heart disease isn’t even as bad as some people’s I know. In my cardiac support group, I have met folks who have been through multiple-bypass surgeries, been airlifted, or have external heart pumps because they are transplant candidates. I “just” have 2 stents and have narrowly missed 2 heart attacks and I’m doing pretty well. But even so I’m still living with chronic illness, and it so gets me down at times, especially on top of getting older and developing joint pains and mobility issues.

    I especially relate to the comments on diabetes. I was diagnosed with type 2 about 12 years ago and told I needed to reduce my A1C of 11 down to somewhere below 7. My doctor even said if I could get it to 6, she’d take me off all the medications. That set me up for feelings of total failure when I just couldn’t seem to do that. The numbers were a mystery to me and I didn’t know what to do to reduce them. I had it down into the 6’s after my first stent and losing weight, but now it’s back up into the 7’s.

    At this point they say it’s time for insulin or another medication, and I’m so resisting this just because it makes me feel like a total failure. I said as much recently to my nurse-practitioner, who is so easy to talk to, and she understood and admitted that they do present diabetes care like taking insulin as the last measure would mean the patient failed somehow. I feel like I can’t win and I just don’t want to take any more medications.

    I do cooperate with what my doctors want, usually after a bit of protest, but overall I feel like if I were to do everything my doctors want me to do every day, I’d be spending a major portion of my life just dealing with health and illness issues: cardio exercise half an hour, foot checks and cream my feet, keep track of all those various numbers, more exercises for balance and strength, keep track of prescriptions and fill those medicine boxes, cook and eat foods that are healthy, lose weight, brush and floss teeth twice a day, and now even sleep with a CPAP machine at least 7 hours a night — where does it end?

    I used to feel totally guilty about having a spoonful of sugar in my morning mug of coffee but I don’t anymore. My morning routine of relaxing in my easy chair with that coffee is a total non-negotiable in my life and a little sugar just won’t kill me. There is quality of life and then there is quality of living.

    Yes, I just want to be a person!!!

    Liked by 1 person

    • Carolyn Thomas November 4, 2018 at 2:38 pm #

      Hi Meghan – thanks for your comments, especially about your experience living with diabetes. I’m sure you’d enjoy reading the rest of the Thomas Goetz article that I mentioned here. No wonder you’d feel like a “success” if you got your A1C level down to 6, but a “failure” if you didn’t!

      Like

  12. Linda C Boberg November 4, 2018 at 6:36 am #

    This is all so true! My mom, gone for 8 years now, was the most noncompliant patient ever. My sisters and I were so frustrated with her because she felt that ONE doctor should handle her. She wouldn’t follow most of their advice.

    Now here I am, going through my own stuff, and it is overwhelming! Too many docs, too many tests, and medicine that all has horrible side effects. And some of the doctors do NOTHING when I see them except ask basic questions. So I get this article totally. I even once in a while say out loud, “I get it now, Mom.”

    Liked by 1 person

    • Carolyn Thomas November 4, 2018 at 2:34 pm #

      How ironic that you now have all of this understanding and compassion for your mom’s reality, Linda. Amazing how sharing a similar experience can produce enlightenment! 😉

      Like

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