When you know more than your doctors about your diagnosis

~ Carolyn Thomas

by Carolyn Thomas  ♥  @HeartSisters

One of my blog readers needlessly suffered debilitating cardiac symptoms for a number of years before she was finally correctly diagnosed (thanks to a second opinion) with coronary microvascular disease (MVD). During those years, she’d read everything she could get her hands on in a desperate effort to solve this mystery. But when she asked her own physician if MVD might be the culprit, he dismissed this diagnostic possibility, adding that he “didn’t believe” in coronary microvascular disease.

Didn’t believe in it?!

Please note, darling readers, that we’re not talking about the Tooth Fairy here.

We’re talking about a woman living with a cardiac condition that’s been well-studied (as in, peer-reviewed studies done by respected heart researchers and published in actual real-life medical journals).

As a person who also lives with and writes about coronary microvascular disease myself, I feel lucky that both my family doctor and my own cardiologist are believers. Not only that, but my cardiologist referred me to a pain specialist at our hospital’s Regional Pain Clinic who has completed a fellowship in Sweden studying refractory angina caused by MVD.* 

I’m not 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.

For too many patients, ending up with physicians who are as knowledgeable as mine sometimes appears to be a crapshoot.

We see clear evidence of this reality in the dismal failure of so many physicians to refer their eligible heart patients to cardiac rehabilitation programs. A number of recent surveys have reported appallingly low physician referral rates in the order of 20% despite the fact that cardiac rehab is a Class I treatment recommendation (which means that “a procedure/treatment should be performed/administered” according to international best practice guidelines because it is proven to improve outcomes and save lives). Yet even when eligible heart patients – particularly women – ask directly for referrals to attend cardiac rehab, too many of their physicians are not only failing to refer them, they’re actively dissuading patients from attending, instead spouting meaningless alternatives like: “Just exercise and eat a balanced diet.”  NOTE TO PHYSICIANS:  there IS no alternative to a supervised program of cardiac rehabilitation.

So much of 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 personal training and knowledge 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 physicians do. It’s called having “skin in the game”.

It’s important to keep in mind that physicians have plenty of book knowledge about what’s happening to other peoples’ bodies. But until they’re the ones walking a mile in those hospital booties, they may have no clue about what day-to-day life is actually like for those patients. If they did, they wouldn’t be nearly as gobsmacked as they appear to be when they’re the ones suddenly lying on the hospital gurney.

Consider, for example, Annette McKinnon. She is a Toronto blogger and patient activist who lives with two debilitating 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 experience after completing comprehensive patient education courses.(2)  Specially trained teams of two health care professionals (a Diabetes Specialist Nurse and a dietitian) did the teaching for these courses.

But lead researcher Dr. Rosamund Snow and her colleagues 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 a good news/bad news story. The good news: taking a useful patient education training program is “life-changingly positive”. Bad news: the same condition-specific training, warns 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 concludes:

“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.

But even worse, they then faced lack of support from physicians who felt threatened or undermined by their well-educated patients.

Just imagine being a patient living with a diagnosis that most physicians are NOT as familiar with (like coronary microvascular disease, for example –  or like Spontaneous Coronary Artery Dissection – SCAD).

A similar circumstance 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 by doctors “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 in convincing Mayo Clinic cardiologist Dr. Sharonne Hayes to undertake groundbreaking SCAD research – which 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 diagnosis (including input from other SCAD survivors she found on WomenHeart’s online support community) gave Katherine a degree of expertise in this often-misunderstood diagnosis beyond that of any physician who has little experience 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 do realize that they might be more knowledgeable than their physicians about their specific condition: how to communicate their expertise/opinions to doctors in a way that won’t get them labelled a “difficult patient“?

Despite this 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 tell the heart patients on my blog and in my presentation audiences is that they too must now 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.

.

* 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 symptoms of chest pain, shortness of breath, and crushing fatigue.

♥

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 “What Happens When Patients Know More Than Their Doctors? here in 2015.  Rest in peace, dear Rosamund. . .

.

(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 doi:10.1136/bmjopen-2013-003583

Q:  What has helped you to become an expert in your own diagnosis?

See also:

Published by Carolyn Thomas

17 thoughts on “When you know more than your doctors about your diagnosis”

  1. Hi. How can I email you? I am not getting diagnosed for severe chest pain, and intimidated at the hospital. Gone on for months and worsening. With clot history, I’m hoping not pulmonary clots but a lung xray shows symetric..and yep..still ignored and demeaned. I have work and chores that I must do and bills to pay.. and I value my life. I have had it with females mistreated and blocked equal access in medical. I am suffering for nothing and stuck with bills as drs fraud code. This is insane. I would so appreciate a voice that values my life. Thankyou.

    Like

    Reply

    1. Hello Reb – this is the best way to reach me (by commenting in response to a blog article like this one). I’m not a physician however so it’s important to remember that I’m unable to offer any medical advice. I can say very generally that, right now, you don’t know at all if these issues are heart-related or not (many symptoms are shared by many totally different diagnoses, so it’s quite common to be confused by symptoms. And so much of medicine is just trying to rule out what the problem is NOT.

      I have a suggestion that might help you: since I’m just one person, and I’m a heart patient, and not a healthcare professional at all, I like to recommend that readers visit the online support community at WomenHeart: there are thousands of women on this site, it’s free to join, and you can find hundreds of topics to browse, or start a new discussion topic if you have questions, 24/7. Just click here to join.

      You’ve taken the time to leave quite a few comments here today, so I can tell that this is a really distressing problem for you. I’m finding it difficult to edit them all however because of the typos (you must be a fast typist!) I try to make sure that other readers can understand all comments clearly, because nobody wants to be misunderstood when they’re trying to make a point. You can help make that easier by just taking a big breath when you’re finished writing, then taking a minute to re-read what you’ve written once or twice before you hit the “publish” button to make sure all the words are just what you want to say, okay? Best of luck to you….

      Like

      Reply

  2. Thank you for writing this post about patients sometimes knowing more than doctors about their conditions.

    I’ve had a lot of trouble lately with having medical issues that my doctors can’t seem to do anything about. I had a doctor who blamed every single symptom on my depression. I told her I had done some extensive and careful research (admittedly online) and thought I had Lyme disease, and that the test recommended by the CDC was agreed to have very little validity, and she point-blank refused to listen to me, just ordering the usual test again. Of course, it came back negative. So I went to a Lyme doc and got a more accurate test… and sure enough, I have Lyme disease.

    Then I decided to tackle the depression and fatigue that had been dogging my life for years and that six different antidepressants hadn’t helped. I thought maybe I had hypothyroidism. Went to a doc, he didn’t test my blood but put me straight onto pork hormone… and my depression went away in a WEEK. Saw an endocrinologist about the persistent fatigue, and she told me that since my blood test didn’t show hypothyroidism, the depression going away was placebo effect, and ordered twelve tests to find out what was causing my fatigue. They all came back normal.

    So once more, I did my own research. Turns out that I was on two different progestin-only birth control methods, which was giving me excess progesterone–thus causing my fatigue–and that she hadn’t noticed. Also, turns out that T3 can be used to augment antidepressants. When I alerted the endocrinologist to this fact, she told me I was wrong, and sent me “evidence”… which turned out to agree with me. THIS WOMAN IS A SPECIALIST IN HORMONES. [/rant]

    How is it that I, with a humanities degree, a good amount of skepticism, and Google can frequently find better answers to my medical problems than my doctors? It’s maddening, and every single thing you seem to read about patients diagnosing themselves seems to be doctors complaining about patients doing it and saying we’re wrong. It just feels to me like one more way in which our doctors aren’t listening to us.

    So thank you for acknowledging that sometimes patients do know what they’re talking about and that doctors sometimes don’t know how to deal with that!

    Liked by 1 person

    Reply

    1. You ask some valid questions! I believe that the difference is that even the most well-informed and compassionate physician isn’t living 24/7 with the same symptoms that patients are. So it’s not surprising at all to me that patients will dig and search relentlessly for some, any answers to their unanswered questions. You’re a good example of that. Best of luck to you…

      Liked by 1 person

      Reply

  4. Wonderful post about a very important topic. I’ve encountered some of these issues now that I help families learn what geriatrics care to ask their doctors about. The families like having a better understanding of how to optimize the care of older adults, but they do encounter pushback from doctors.

    Many doctors think that because they care for many people in their 70s, 80s, or even 90s, they are practicing geriatrics. But in most cases, they aren’t modifying the healthcare properly (e.g. prescribing medications known to be risky to older adults).

    I agree that we have to keep providing the information to patients! Doctors are slowly becoming more accepting of the fact that they often don’t know everything… or should be prepared to quickly look something up before dismissing the information the patient brings up.

    Liked by 1 person

    Reply

    1. Thanks so much for weighing in here, Dr. K.

      Geriatrics is a perfect example of this issue – and especially when it comes to family members/caregivers of the patient. As advocates, these can often become the true experts!

      Like

      Reply

  5. Thank you Carolyn for your relentless advocacy!

    “What has helped me become an expert in my own diagnosis?” Both I & my cardiologist finally being able to say out loud: “I don’t know what is causing this. But, we will keep searching!”

    Eight years later, (7 heart events leaving me disabled with heart failure)- I found out… from someone else’s shared story in my Support Network… I had a previously thought “rare disorder” of Familial Hypercholesterolemia (FH). Rare? More like 1 in 200 of us! And as you mention, “rarely accurately diagnosed!”

    I researched this with my doctor, started a new “treatment” (LDL-Apheresis), and even went through The FH Foundation’s Advocacy training.

    More blogs like yours means someone else might not have to go through the extremes of these women! Thank you once again, Carolyn!!!

    Liked by 1 person

    Reply

    1. Thank YOU Stephanie for helping to inform us (and our physicians) about Familial Hypercholesterolemia – speaking of relentless advocacy! And not only are you volunteering with the FH Foundation (a great website, dear readers, for those looking for more info!) but I know that as a 2010 ‘graduate’ of WomenHeart Science & Leadership training at Mayo Clinic, you’re also doing important advocacy work for your heart sisters in Colorado! I believe that each of us gets involved in this kind of volunteering for precisely the reason you mention: so that someone else might not have to go through what we did. Big hugs to you….

      Like

      Reply

  6. We are the best doctors of ourselves in analyzing our health. I truly believe in this, in terms of my diet, fitness activities and mental stress, I know myself at what extent I can stretch my endurance and I will plan accordingly, at the same time I do also have guidance from my doctor which will help me in monitoring my health and take suggestions.

    Liked by 1 person

    Reply

    1. I believe we need both: awareness of and responsibility for making good choices about our own health, and a sound partnership with doctors we trust when complex issues arise that need medical consultation.

      Like

      Reply

  7. I know this one all too well. Along with several relatively unusual genetic conditions, one of them cardiac, in my youth I survived a cancer that most docs, including oncologists, have never heard of, and so have a complex of conditions due to radical treatments. Many of those are outside the experience of general docs, and even specialists.

    We live in the San Francisco area – loaded with docs and specialists of all kinds – but we are members of The Original Granddaddy HMO, which is often cited as “model affordable health care.” The HMO will only cover visits to their own doctors, and makes more money by doing less. They do pretty well with cookie cutter accidents and conditions, so lots of people are happy.

    But I am way on the edges of the Bell Curve, and in many ways. I have correctly diagnosed myself on numerous occasions, and identified an appropriate course of treatment, but been dismissed, and for years. Far too many HMO docs are unwilling to contradict the opinions of previous docs, and all the information is there at the touch of a screen.

    We have paid for the opinions of outside specialists, but usually find them rejected by the only docs who could prescribe and act on them. Or, at least, the only ones we can afford. After lots of homework (and searching the entire greater Bay area) I have found some HMO docs who will diagnose and treat appropriately, usually without actually contradicting the previous denials. Talk about burden of care!

    Just this week I spent nearly 2 hours online and then on the phone with the pharmacy center – trying to renew a few hard-won Rxs (that I absolutely need to function) before a long trip to Canada, among other places…

    Liked by 1 person

    Reply

    1. Thanks so much for sharing your unique perspective here, Kathleen. You’re like the poster child for self-diagnosing patients! Little did you know in your youth that you’d have to be doing that… You are absolutely correct when you write “Far too many HMO docs are unwilling to contradict the opinions of previous docs…” That’s called Diagnosis Momentum (accepting a previous diagnosis without sufficient skepticism). Here’s more on that plus six other common ways misdiagnosis happens from a study reported in the journal, Academic Medicine.

      Like

      Reply

    2. Kathleen, my heart goes out to you. Insurance in my opinion should be the last place to determine which doctors we see, or treatments we receive and when. However, until better reform is accepted, this is our reality. You should never be afraid to know more about yourself than your doctor. It will help when you get to the right one.

      Liked by 1 person

      Reply

  8. Hi, to be honest “disbelieving” doctors can be a problem here in the UK too.

    For example; for years I have had pains in my chest, etc. I have Tetralogy of Fallot too, so I am not daft to things, I explained my symptoms to my doctors/consultants, who told me “nothing to worry about”. This has been an ongoing problem for 6 years, until I had enough and a NEW consultant (younger) said he wanted to try something else.

    It turns out the pains in my chest were far from “nothing to worry about” , my heart had been doing approximately 320 m/s…. Yep, now who says nothing was wrong!?

    Yet due to the device I was wearing not picking it up correctly, it was showing sinus tachycardia. I have had medical training and would not give in to finding out after a fall off a ladder, and them not finding out what was wrong, then other things.. what the matter was.

    Sadly an ablation has not worked, I now have an aneurysm and other things now, but my advice is do not just Google things, get another opinion, twice if you have to.

    Liked by 1 person

    Reply

    1. Thanks educatedmum – you are 100% correct. If we encounter a “disbelieving” physician, Dr. Google is NOT our only option! If possible, a second (or third) medical opinion should always be considered when facing such disbelief. For some patients however (in small towns or rural areas, for example) there may not be that choice.

      But even in the Big City of Toronto, a recent blog reader told me that her doctor had finally agreed to order a specific cardiac diagnostic test for her only if SHE tracked down a local hospital that offered this test! The bottom line seems to be: nobody cares as much about your own health as YOU do! I love your ‘falling off a ladder’ analogy by the way….

      Like

      Reply

Your opinion matters. What do you think?