15% of all medical presentations are misdiagnosed in developed countries. (That’s just over 1 in 6 patients!) - a surprising statistic.
Doctors don’t like uncertainty and yet medicine is by definition, is a grey zone; a veritable quagmire of intriguing mysteries that inspire detective-like investigative determination to unravel.
At times the art of diagnosis can be a study of the occult, but rare pathology abounds and yet is often overlooked, because it is not on the medical investigator’s radar. With all the tens of thousands of unusual conditions in the world, statistically someone’s got to have them, but if a particular illness is not considered in a medical work up then it will remain undiagnosed.
The process of medical diagnosis can be so complex that, in certain circumstances, a conclusion is never reached. Doctors often say, ‘I’m sorry I can’t help you’ to patients who present with confusing symptomatology that cannot be explained after thorough investigation. It is a sentence that will cause heart sink in even the most positive patient and one which should not be used lightly by the doctor. I believe It is a sentence which the patient should not accept. I say this, because anecdotally, in the literature and in the online media are a bewildering number of stories of patients with complex medical problems being labelled malingerers, hypochondriacs, difficult, with personality disorders, or as attention-seekers, simply because the real diagnosis was missed.
Complex and rare medical problems can often mimic one another and do not come with an easy to use instruction sheet for their diagnosis. To make things more difficult for medical professionals, is what is taught in formal medical education regarding these illnesses often varies considerably to how they present in reality.
It is no wonder that doctors make mistakes.
There are often subtle signs and symptoms that can be missed by even a well-trained medical eye, and stories that are neglected, because they do not sound like what the textbook espoused. The art of diagnosis is challenging, for even the most experienced doctor. It is OK to be unable to make a diagnosis, but one thing that is never acceptable is to be doubtful that a patient’s condition is real. Genuine Munchausen’s syndrome and Malingering are rare and the chances that a very real disease is being missed is far, far more likely.
It is a serious failing for a patient to leave the care of a doctor and feel that they are not believed. The damage this does to the patient magnifies any injustices delivered by being burdened with pathology alone. It should not happen. But it does. Part of the problem is the power difference that is inherent in the doctor patient paradigm. On the one hand, there is the patient, who is the expert on their own body, and then there is the doctor who is supposedly the expert in the field of medicine, backed by the health care system. This can be daunting for patients interfacing with the medical system and can lead them to ignore their gut instinct when something isn’t quite right.
Patients are in a position of extreme vulnerability when they are being dealt with by the medical profession. It is important for doctors to recognise this and for a patient to feel believed. The very least a doctor can say to a patient in the context of a complex case is to explain that a diagnosis has not been reached and to convey the message, ‘I believe you’. It might be the only medication available at that point in the process!
Of course, receiving a diagnosis, doesn’t always mean curing a pathology. Some patients just want to know what’s wrong, others are expecting a cure, but unfortunately there are not cures for many medical conditions even with all the advances of modern medical endeavour.
I am always deeply disturbed by patient stories of extra suffering, a permanent deterioration in health, or even death as a result of not being believed. flow on effects of this phenomenon affect society on many levels. In the US it is estimated that between 40,000-80,000 hospital deaths result from misdiagnosis per annum.
Untreated chronic health problems, the burden to family members, the costs of sick leave etc are a serious and expensive problem for our society to deal with, making this issue even more serious.
So, if you are a patient who deeply believes that you are not well and have not received an answer you feel explains your symptoms, do not give up. Keep searching until you find the answer.
A great Australian story of delayed diagnosis is recounted in ex-nurse Sue Currie’s book ‘Difficult Patient’ which describes an unbelievable experience with a rare metabolic disorder, porphyria. Her story details years of horrendous suffering at the hands of a health care system where she was disbelieved and labelled as a pain-medication addict. It is a really worthwhile read for anyone who has battled with the medical system for a diagnosis.
The bottom line is that it is of the utmost importance for doctors to believe their patients and to recognise when to refer cases beyond their clinical acumen. Equally as important is for patients to be strong advocates for second opinions, to trust their gut instinct, if they believe their condition has not been adequately dealt with. It is never wrong to seek a second opinion.
Getting a correct diagnosis can be expensive, time consuming, might involve doctors from a number of different sub-specialties and might also involve travel to find the right physician for the illness, but it is important to be confident that a case is dealt with by the right doctors and that everything has been done in the search for a diagnosis.
Books about Misdiagnosis/Delayed Diagnosis …
Misdiagnosed: One Woman’s Tour of—And Escape From—Healthcareland, by Jody Berger,
Misdiagnosed: The Search for Dr. House, by Nika C. Beamon, ISBN-13: 978-1500436674,
Difficult Patient, The Woman With The World’s Rarest Disease, The Doctor’s Who Left Her in
Agony, and The Maverick Who Saved Her Life, By Sue Currie, ISBN-10: 1925584097; ISBN-13:
A few Australian stories of delayed/misdiagnosis: