As in so many areas of life, it is hard or often impossible to know 'what you don't know' or to recognize what hidden issues or dangers are out there.

When you are dealing with doctors and medical issues, what you don't know and the hidden dangers of staying with the wrong doctor can be disastrous and even life-threatening.

The effects of staying with 'a wrong doctor' can vary from mild frustration to long term effects on the quality of your healthcare.

Changing doctors isn't easy or for the faint of heart

I get it.  Finding, meeting and working with a new doctor is a lot of work and can be scary too.

Let's take a closer look at some of the hidden dangers of staying with the wrong doctor.

Danger #1:  Emotional or psychological effects

When a doctor is dismissive or assumes the issues are from anxiety or depression, it can have a huge impact on you and your loved one's emotional and mental health.

How many of us have been told that it is anxiety?  Or if you make them...

Our medical system has changed a lot over the last 20 years, especially for the doctors working in the system.

Intuitively and through our own experiences, we can see that doctors are struggling with the changes including high levels of burnout, frustration and even an increased rate of suicide. 

So, what is it that is causing the doctors’ struggles? 

Based on a 2018 survey, doctors reported their top two least satisfying factors about medical practice as listed below.

EHR design/interoperability                  39.2% 

Regulatory/insurance requirements    37.6% 

Loss of clinical autonomy                       37.0% 

Professional liability/malpractice          30.2% 

Amount of time with patients                12.4% 

Income/compensation ...

If you have been in the rare disease world for any length of time, you have likely heard of a rare disease expert who has closed their practice, retired from patient care,  been pushed out of a larger organization, or opened a private pay clinic.

Experts like Dr. Korson dealing with mitochondrial disease, Dr. Afrin working with mast cell diseases, Dr. Boris and Dr. Schofield focusing on autonomic issues like POTS, and many others, have left leaving even more patients without appropriate or even adequate care.

The sad part is that it is rarely the doctor's choice to step back from rare disease patient care.  Often, the rare disease doctor’s practice is seen as too risky, too controversial, not productive enough because of long appointments and high resource needs, or not financially lucrative.

Why does this keep happening and what can we do to help our rare disease experts help us get the care we need?

Let’s start by looking at the reasons our rare disease...