As a person who lives with and writes about coronary microvascular disease (MVD), I feel lucky that my family doctor, my cardiologist and my pain specialist are all believers. It’s like the trifecta of diagnostic wins for a heart patient! I say that because one of my blog readers, after asking her physician if her puzzling cardiac symptoms might be due to MVD, was told:
“I don’t believe in coronary microvascular disease.”
I guess it’s time to remind such physicians that we’re not talking about Santa Claus or the Tooth Fairy here.
We’re talking about a very real cardiac condition, researched-peer-reviewed-and-published-in-medical-journals real. Not only did my own cardiologist refer me immediately to a pain specialist at our hospital’s Regional Pain Clinic after my correct diagnosis, but he turned out to be a pain specialist who had completed a fellowship in Sweden studying the debilitating refractory angina caused by MVD.* Another win for heart patients!
I don’t feel lucky to live with this diagnosis, but I’m damned lucky not to have to rely on physicians like the non-believer that my ill-fated blog reader had. What would I be doing now, how would I cope, how could I live if my own well-informed cardiologist hadn’t correctly diagnosed me with MVD a year after my 2008 heart attack? For too many female heart patients, however, ending up with physicians who are as knowledgeable as mine sometimes appears to be a crapshoot.
So much of diagnostic medicine in general, as I’ve observed frequently, is simply trying to figure out what the problem is NOT.
A study published in the American Journal of Medicine reported that the role of diagnostician remains one of the most challenging roles of any physician.(1) Researchers estimated that physicians carry two million facts in their heads just to fulfill this unique role.
And with medical knowledge expanding rapidly while also becoming increasingly specialized, and with 13,000 known medical conditions, no individual doctor can be an expert in all conditions across all specialties based on academic training alone.
If they aren’t willing to acknowledge this reality – if they continue to believe they’re correct simply by virtue of the letters M.D. after their names as my blog reader’s doctor was – here’s what can happen, according to Dr. Jerome Groopman in his excellent book How Doctors Think. He warns:
“Specialists in particular are known to demonstrate unwarranted clinical certainty. They have trained for so long that they begin too easily to rely on their vast knowledge and overlook the variability in human biology.”
It may surprise such physicians to learn that patients who live with rare or chronic illness often report that they know far more about their condition than their doctors do. It’s what’s called having “skin in the game.”
When my friend Gail was diagnosed with Stevens Johnson Syndrome (SJS) – a rare and horrific drug toxicity reaction to a commonly prescribed medication – she learned, for example, that not one of the physicians in her hospital had ever actually seen an SJS survivor in the flesh. It is so rare that it took three days and many wrong guesses to finally come up with an accurate diagnosis. Before that day, I watched one of the docs who saw her in Emergency explaining to the small gaggle of med students trailing behind him that what Gail had was Bell’s Palsy. (Note: I’m not a doctor, but even I knew this was no Bell’s Palsy!)
Gail ultimately had a steady parade of physician and student visitors during her 5 1/2 week hospital stay, as word spread throughout the hospital that a real live SJS patient was in the house. Gail survived, but she is now permanently blind.
And it’s fair to say that after years of living with and learning about the resulting aftermath of this condition (even traveling from the west coast to Boston to consult world experts in SJS there), Gail likely now knows far more about SJS than any physician possibly could.
But this level of awareness isn’t limited to extremely rare diseases. Consider Annette McKinnon. She is a Toronto blogger and patient activist who lives with two debilitating chronic conditions: rheumatoid arthritis and an immune system disorder called Sjogren’s Syndrome. Annette mused recently on Twitter:
“I am aware of more than my doctor sometimes, especially in my disease area. It matters more to me.”
In one of the most interesting studies on what it’s like for patients who know more than their physicians, people living with Type 1 diabetes were interviewed about their experiences after completing comprehensive patient education courses.(2)
But researchers, led by the late Dr. Rosamund Snow at King’s College London, found surprising pushback from the physicians of these educated patients in reaction to their increased knowledge of diabetes:
“Both post-course and several years later, most participants spoke of the experience of taking part in this education as life-changingly positive. It helped them understand how to gain control over a very complex disease and freed them from dependence on medical advice and restrictive regimes.
“However, interactions within the health system following patient education could be fraught.
“Participants emerged from the course with greater condition-specific knowledge than many of the health care professionals they encountered.
“When these professionals did not understand what their patients were trying to do and were uncomfortable trusting their expertise, there could be serious consequences for these patients’ ability to continue effective self-management.”
So this is actually a good news/bad news story.
The good news: taking a useful patient education training program is “life-changingly positive”.
The bad news: the same condition-specific training, warned Dr. Snow, can bring “expertise taught to patients in one branch of medicine that can be considered non-compliant by those who are not specialists in that field.”
For example, Dr. Snow’s study concluded:
“Patients who have in-depth knowledge of their condition encounter problems when their expertise is seen as inappropriate in standard healthcare interactions.
“Although patient education can give people confidence in their own self-management skills, it cannot solve the power imbalance that remains when a generalist healthcare professional, however well-meaning, blocks access to medication and supplies needed to manage chronic diseases successfully.”
The participants in Dr. Snow’s study already had a well-recognized diagnosis (Type 1 diabetes) that is covered in all med school training – yet these educated patients still knew significantly more about the disease than their primary care physicians did. They had their own day-to-day lived experience of their diagnoses for several years, plus their additional specialized clinical training.
But they faced lack of support from physicians who felt threatened or undermined by such well-educated patients.
Just imagine being a patient living with a cardiac diagnosis that many physicians are not familiar with (like coronary microvascular disease, for example – or like Spontaneous Coronary Artery Dissection – SCAD).
That’s what happened to Katherine Leon. At just 38 years of age, she had a heart attack following the birth of her second child, caused by SCAD.
But it took six full days of being repeatedly told “It’s not your heart!” – until she finally underwent cardiac catheterization and emergency double bypass surgery.
Having survived what most doctors believed at the time was a rare and usually fatal heart condition, she went on to learn as much as she could about this diagnosis. She was even instrumental, along with SCAD survivor Laura Haywood-Corey, in convincing Mayo Clinic cardiologist Dr. Sharonne Hayes (the founder of the Mayo Women’s Heart Clinic) to undertake groundbreaking SCAD research. Those studies suggested for the first time that SCAD isn’t rare after all – it’s just rarely correctly diagnosed. (Read more of this amazing story as reported in The Wall Street Journal).
Six years of tenacious digging and researching her own diagnosis (including important input from dozens of other SCAD survivors she found on WomenHeart’s online support community) gave Katherine a degree of expertise in this often-misunderstood diagnosis well beyond that of any physician who has little experience working with SCAD survivors (i.e. most of them).
How did her journey from patient to expert begin? In her own words:
“The process started as one furiously angry Momma who wasn’t going to take, ‘Get over it!’ for an answer one minute longer.”
Katherine’s comment reminds me of a further impossible dilemma facing patients who might be more knowledgeable than their physicians about their specific condition: how do you communicate informed opinions to doctors in a way that won’t get you labelled a “difficult patient“?
Despite this very real possibility, I encourage all patients to become as informed as possible about their own diagnosis, and to work in partnership with a physician they can trust. There is simply no excuse for not educating yourself about your health.
What I now tell the heart patients on my blog and in my presentation audiences is that now is the time to become the world experts on their own particular diagnosis. Or, as another of my readers once spelled out succinctly to her own physician:
“This is your career – but it’s my life!”
Katherine Leon is a good example of such an expert, and she is blunt in her assessment that motivated patients are indeed capable of understanding complex medical information when it affects their own lives, as she explained:
“The whole idea that patients are stupid is half the hurdle. Just because you are sick, doesn’t mean you aren’t intelligent or your brain doesn’t function!
“I can Google, read professional journals, and ask questions of the experts.”
And so can you.
NOTE FROM CAROLYN: I was terribly saddened to learn that last month, Dr. Rosamund Snow died suddenly by suicide. I first met her online when she contacted me in her role as Patient Editor at the British Medical Journal (BMJ). This brilliant, funny and fierce champion for the patient voice in her journal had, according to her husband Stephen, suffered from depression for some time. Rosamund was instrumental in helping me with all of my essays published in the BMJ. I first wrote about her research paper called “When Patients Know More Than Their Doctors? here in 2015. Rest in peace, dear Rosamund. . .
ANOTHER NOTE FROM CAROLYN: I wrote much more about the cardiology gender gap 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 20% off the list price).
* Refractory angina is a form of chronic coronary artery disease for which both conventional medication therapies and revascularization procedures are ineffective. Patients typically experience debilitating daily symptoms of chest pain, shortness of breath, and crushing fatigue.
(1) Pauker SG, Gorry GA, Kassirer JP, Schwartz WB. Towards the simulation of clinical cognition taking a present illness by computer. Am J Med 1976;60:981-96.
(2) Snow, R. et al. What happens when patients know more than their doctors? Experiences of health interactions after diabetes patient education: a qualitative patient-led study. BMJ Open 2013; 3:e003583
Q: What has helped you to become an expert in your own diagnosis?