Doctors don’t like to say ‘I don’t know.’ It appears to be a phrase they hate. There’s a lot they will do to avoid acknowledging that they aren’t sure as to what is happening – Doctors will often use lots of scientific jargon and short phrases that remove or dismiss responsibility from themselves. Let’s explore them, shall we?
They describe the condition
There are many diagnoses out there that give doctors an easy out when it comes to explaining a strange symptom. The most common ones, arguably, are ‘idiopathic’ and ‘essential’. If you are told you have an idiopathic or essential condition, be aware that the doctor has only told you what’s happening, not why or how!
The term idiopathic literally means ‘arising from an unknown cause’. My partner was diagnosed in July 2017 with idiopathic osteoporosis. Osteoporosis itself is much more a definition than an explanation, as osteoporosis translates into ‘porous bones’. For people who fit the standard expectations, idiopathic is sometimes all the closure you would get. For example, a woman in her 70’s who gets the osteoporosis diagnosis is going to be told she has idiopathic osteoporosis, presumably due to age. However, since Al is a man under 40, it was essential to dig deeper to define the cause, as the usual mechanisms were not in play.
‘Essential’ is another way doctors avoid needing to say ‘I don’t know’. The term essential is used in standard English to describe being either of the utmost importance (this is an essential piece of the dish) or of being purely that one thing (‘essential oils’). In medical terminology, though, ‘essential’ is a synonym for idiopathic – indicating that the issue is just the description with no cause attached. ‘Essential’ is often used to describe neurological symptoms that have no obvious connection to the conditions that might usually be associated with them. Essential tremors are an example. If your doctor uses idiopathic or essential in their diagnosis – or gives you a descriptive diagnosis (like osteoporosis), with no mention of why it’s happening, it’s time to press them to explain further or seek a second (or third) opinion.
Blaming the Patient
Sometimes when doctors have trouble finding the cause of the problem, they turn around and make it, on some level, the patient’s fault.
‘Maybe he didn’t develop properly as a child’ is doctor language for ‘I see there is a problem, there’s irrefutable evidence of that. However, I can’t figure out the cause, so maybe he was born this way and we only just figured that out’. My partner and I were told this when we were investigating the cause of his osteoporosis. His broken hip and DEXA scans proved that he definitely had unusually brittle and weak bones, but this endocrinologist ran every test she could think of, and everything she thought to check didn’t explain anything. After we assured her that Al had not had weak/brittle bones as a child (he actually had been pretty accident prone, and at one point he broke a rock with his head!), or as a young adult (he was very involved in mixed martial arts, so had plenty of opportunities to reasonably break bones, but didn’t), we struck out in search of an endocrinologist who could think of more options.
‘This may be a genetic variant’ – sometimes abnormal test results fit with a person’s genetic history. Al was told a couple times that his blood test indicated mild anemia, but at one point another doctor of his looked the information over and told him he likely has smaller hemoglobin than average because he is of distant Mediterranean descent. I’m not disagreeing with the statement, it may be true – Al is Hispanic so there is some Spanish in his ancestry. However, it did take the focus off his hemoglobin size and density when he actually had a form of anemia that required treatment.
Malingering is the process of pretending to have a problem in search of some form of secondary gain. For example, a person with an opiate addiction may pretend to be in more pain than they are in to get an extra pill. For patients with many types of invisible illnesses, one of the ways doctors may dismiss our very real pain or other symptoms is to say that we are malingering in order to get attention or other gains. I was very fortunate that I was not accused of malingering, but many other people with conversion disorder/FND, fibromyalgia, and other conditions that don’t show on scans or tests are often accused of it. This results in these patients needing to ‘prove’ that they aren’t faking their illness.
Ways Doctors say ‘I give up’
‘Diagnosis of exclusion’ means that the doctor has run out of possible diagnoses. Doctors either recognize a condition when you walk in the room (‘oh that sounds like whooping cough’, or ‘I’d know that rash anywhere, you have shingles’), or they need to start coming up with hypotheses (guesses) that they can then test (usually against samples from you, or testing your response to stimuli). However, at some point, the doctor will run out of guesses. When the doctor runs out of guesses before you have a diagnosis, their last guess becomes their ‘diagnosis of exclusion’ – usually something that is difficult or impossible to confirm or deny with additional testing.
My condition, FND, used to be considered a diagnosis of exclusion by many neurologists – and honestly still is at times, even though there are now are relatively simple confirmatory tests out there – mostly related to consistency of symptoms and ability of the patient to be distracted from symptoms. Unfortunately, these are sometimes associated with malingering (pretending to be sick for secondary gain), and a lot of neurologists simply haven’t kept up with the research.
‘It’s a coin toss’ is usually used in regards to treatment. Will this surgery help me, doctor? ‘It’s a coin toss’. This is more likely to occur when your condition has been happening for a long time. If a lot of treatments have already been undergone and haven’t helped, the doctor is more likely to suggest treatments that are higher risk or are likely to be less effective. By telling you his or her degree of uncertainty, the doctor is abdicating their medical responsibility to advise you, and allowing your desperation or pocketbook to determine your course of treatment. While this may at times be a correct answer, it still isn’t useful for you as the patient. If you get told this, I suggest seeking a second opinion or discussing the pros and cons further with your doctor.
‘Let me refer you to…’ is, in all honesty, the most hopeful forms of giving up. When a doctor suspects or knows that your condition is treated by a different type of specialist, they generally refer you to the specialist in order for you to be properly treated. Sometimes, the more hopeful times, they get information that adjusts their thoughts – for example, Al’s second endocrinologist referred him to a hematologist because his B12 was almost unmeasurable and so she suspected he had pernicious anemia. Her suspicions were correct, so we are grateful for the referral.
I was referred by a neurologist who specialized in epilepsy to a movement disorder specialist who was able to properly diagnose me. Again, that was a very positive effect – once the neurologist determined that I did not have epilepsy, a colleague of his was able to suggest a movement disorder as an alternative cause – and recommend an office to go to.
However, there are also times where doctors use referrals to get rid of challenging patients. By referring their patient to a different specialist, they are effectively passing the responsibility on and admitting that they cannot diagnose the issue.
Be aware of medical ‘I don’t know’s’
It can be extremely frustrating to see doctors only to learn that they cannot help you. Many doctors have found ways to avoid you realizing that they don’t have an answer until after you leave their office. As a patient, the more easily you recognize the ways the doctors avoid admitting their ignorance, the better able you are to either call BS and demand a better answer, or know when it’s time to find a different medical professional.
Again, be aware of terms that blame or put the responsibility on the patient, and condition descriptions that do not have any ‘meat’ or treatments attached. You deserve to have a full diagnosis, treatment options, and the ability to find people who share your diagnosis. Now that you know the terms, please keep your ears open to protect yourself from these non-answers!
Alison Hayes has a long history with disability and disabling conditions. She managed a mild learning disability in childhood, confusing her classmates by being in both advanced classes and the ‘resource room’. She was diagnosed with depression at the age of
Since then, she:
- got on to SSDI,
- got trained and certified in geographic information systems(GIS),
- discovered new muscles by pulling, straining or spraining them,
- taught college courses in GIS,
- taught a lot of doctors about FND,
- got a master’s degree in organizational change management,
- regained the ability to safely use stairs, and
- Started her own business. Twice.
She currently runs Thriving While Disabled, a blog to encourage others with disabilities to take back control of their lives, and is working on a community-building tool to enable the disabled community.