One MD found out recently what it's like to be on the other side of the patient-doctor encounter. What were her fellow patients saying about doctors?
As I wrote in a recent blog, I have been dealing with a diagnosis that is not well known by many clinicians. My condition is Postural Orthostatic Tachycardia Syndrome (POTS), which is a form of Dysautonomia. In short, upon standing my blood pools in the lower parts of my body and my autonomic nervous system isn’t telling my circulatory system to make adjustments, therefore my heart has less blood to pump up to my brain which makes me dizzy. (I am getting better, thankfully.)
On average, it takes most patient six years to get a firm diagnosis. For one thing, this illness is not widely known among medical practitioners. And the second problem is that the majority of patients with this syndrome are female (more about that later). Lastly, it is a somewhat difficult diagnosis to treat and most patients have to go through many different medicines before they find the right one(s).
I am in several social media groups for this issue. I keep a low profile about the fact that I am a physician; but by the same token, if anyone looked at my page it clearly states that I am one. I try to correct misinformation as well as keep a lookout for medical advice being given, usually by well-meaning but not medical members of the group. (The administrator of the group is appreciative for my help.)
There are occasional posts with “doctor bashing.” Most of these are not naming specific medical providers, but just comments that are negative or disparaging of the profession overall. However, there are names given at times. I try to give general encouragement to others to try again or seek a different provider.
The posts that bother me the most are the ones about patients feeling like they are being ignored, disbelieved, and even at times blamed for their condition (as if anyone would like to feel like they can’t breathe and are going to pass out)! Being a patient suffering with this problem, it pains me that these things happen frequently. Over the years I have had many patients with POTS. I recognized right away what was happening when my symptoms began and didn’t waver (I was fortunate to live near a specialist and got medical treatment within a few weeks).
The point of this blog is to remind all medical people (from the front desk up to the senior physician in a group) that social media is powerful and widespread in our society today. Word travels far and wide, especially when a patient has a bad experience.
I do not expect all physicians to know about Dysautonomia/POTS, chronic fatigue, PANDAS or any of the other poorly understood medical conditions. And certainly no doctor should be treating illnesses with which they have little or no experience. But for goodness sakes, you have try very hard to be compassionate. These patients truly suffer and having a physician or nurse disbelieving or dismissing their symptoms adds more pain to their struggles. Even if you do not know what is wrong with them or are not sure to whom to refer, at least listen to what the patient is saying.
We went into medicine to help people and all pledged to “first do no harm”. Don’t be that physician that gets negative comments on social media. Be the professional that gets kudos for listening with kindness.