An Open Letter to Misinformed Physicians

Even with all of the studies and research that have been done confirming POTS as a real, physiological syndrome, there are still MANY medical professionals who think that A) POTS/ Dysautonomia does not exist, B) POTS is a functional disorder rather than physical one, or C) are simply at a lack of understanding and information about it. I had a recent encounter with a very highly respected physician in the pediatric cardiology community who told me that "POTS is not a real thing." I had been in this doctor's care from infancy into my teenage years, and he was a professional role model for me. Prior to this statement, I had been in correspondence with him regarding a research fellowship at my university (only an hour away from the hospital he works at). 

After deciding to leave school due to POTS, I simply sent him an email saying that I would be leaving for health concerns and would not be able to do research that summer. He immediately responded asking "Sydney - what health concerns?" I have never received such a quick response. In retrospect, that probably wasn't the best email to send to a member of the medical community. At any rate, I filled him in on the situation and he asked me to call him. I did and the conversation was pretty much him telling me that POTS isn't real and that I'm making the wrong decision (keep in mind he was no longer my cardiologist at the time). Other emails followed saying similar things (which are detailed in the letter). I have never felt more angry, humiliated, and belittled in my life. Thank you for your input (which is completely wrong based on several legitimate medical studies), but the life advice was not at all necessary. I am currently in the care of other excellent doctors for my very serious nervous system disorder, and not once have they agreed nor disagreed with my decision. Keyword being MY. I know MY body and what is going on with MY health. YOUR opinion on the matter was not solicited. *Deep breath* This is what happens when you anger someone with a blog. 

Here is the letter that I wrote to this doctor:

"Dr. ********,

            I’m sure you’ll remember our phone and email conversations which took place last semester. For your convenience and ease-of-reading, I will recount the last three conversations we had:

 On November 8^th, you said: “So here is bottom line. POTS  is not a reason to quit school. Even if one has POTS it is manageable like any chronic illness and stress is the key. If this is worrying you then you should see a counselor- call me and I will get a name”

I replied: “I'm not quitting, just taking a semester. During that semester, I still plan on taking classes online. I find it very difficult to stay proactive in this type of environment when simply sitting up can cause dizziness and tachycardia. I am not worried - just want to make sure that I can continue my education without any more interruptions. I appreciate the gesture.”

You did not reply (not that I was seeking one). However, you did say during our phone conversation that you would be willing to talk about the reasons why POTS “is not a real, physical illness.” So, out of sheer curiosity why you (and so many others) subscribe to this school of thought, I asked over email,

“Why is there such dissension about POTS in the medical community?”

           

            Once again, you failed to reply. I know you are very busy, but I would like an explanation as to why you think POTS is not a physical illness. Your words were damaging and hurtful, and you took an oath upon becoming a physician to “do no harm.” That oath rings true for not only avoiding inflicting physical harm, but also emotional and mental harm. I’m sure you haven’t a clue why they were upsetting, seeing as how you clearly do not suffer with this “imaginary illness.” Please allow me to explain.

            Postural Orthostatic Tachycardia Syndrome, or POTS, is a subset of the Dysautonomia disorders. I pointed out to you that I experience dizziness and tachycardia on a regular basis. I also told you about my fainting episode in class. You are right – ONE fainting episode should not warrant withdrawal from college. However, I worded that email poorly.

I said, “I was diagnosed with POTS at Hopkins last October, and passed out in class recently, which has not happened before.”

What I meant to say was, “passing out while sitting down has not happened before.” I have, in fact, passed out other times, but those episodes were always subsequent to activity. For that, I apologize. This particular faint occurred in a research lab I was participating in, which only added to the concern. Another troubling aspect was after the paramedics arrived, they would not move me for quite a while, due to extreme tachycardia. This is NOT something to be taken lightly.

Your marginalization of what I was and still am going through was rude, dismissive, and out of order. Many people leave school (elementary, middle, high, and college) because of POTS. Many don’t even pursue higher education, and it is not uncommon for individuals to quit their entire CAREERS. I have met a marine biologist and neuropsychologist who, after developing POTS/ Dysautonomia, had to quit their jobs. So please, explain to me how exactly this can be managed. We’ve been on treatment plans with specialists for YEARS, and obviously, nothing is working. We would love to hear your suggestions.

When one’s autonomic nervous system fails to operate in the correct manner, an entire host of problems can be expected. Fainting, dizziness, and tachycardia were aforementioned, but Dysautonomia knows no bounds. Here is a list of other symptoms I (and most others with the disorder) experience regularly:

-          Palpitations/ skipped beats

-          Nausea

-          Muscle pain

-          Joint discomfort

-          Chest pain

-          Various other pain

-          EXTREME fatigue

-          Shakiness

-          Cognitive difficulties

-          Insomnia

-          Exercise intolerance

-          Orthostatic intolerance

-          Pre-syncope

-          Cerebral hypoperfusion

-          Thermoregulatory issues

-          Dehydration

-          Light/ noise sensitivity

-          Headaches

-          Digestive problems

-          Shortness of breath

-          Weakness

-          Blood pooling in lower extremities

-          Dangerously low blood pressure

-          Respiratory problems

This is not an exhaustive list, but I hope you get the general idea.

     

      If your argument is that POTS is caused by deconditioning, I can assure you that is not the case. If you recall, prior to the onset of these symptoms, I was very active and had lost over 50 pounds (as per your instructions). I was doing aerobic exercises daily, performing well in P.E. class, and had taken up golf. In high school, I picked up running as a hobby on the days when I was well enough to do so. That continued in college, and I would be able to run 3-4 times around the interior of JMU’s East Campus. I had considered partaking in multiple 5K races. However, my “breaks” from POTS never lasted long enough for me to train and actually participate in the events. Never has a doctor confronted me about a “smaller than normal heart size” due to deconditioning.

      You seem to believe that POTS is a functional disorder, which I can also refute. It is true that many symptoms of POTS and Dysautonomia can appear psychiatric in nature, and are similar to those present in diagnoses such as Generalized Anxiety Disorder and depression.  You are also correct in saying that “stress is the key,” as the Autonomic Nervous System is greatly affected by stress, but that does not negate the fact that Dysautonomia is, in fact, a physiological disorder. It is typically not caused by stress, and should not be considered to have a psychiatric component. Many recent studies suggest that patients who meet diagnostic criteria for POTS “experience levels of anxiety comparable [1] or less than [2] the general population when ANS symptoms are correctly accounted for [3].”

      Dysautonomia is definitely worsened by stress and anxiety, which is one reason I took time off from school. However, they are not necessarily intertwined, nor are they mutually exclusive. It is important to be able to discern physical symptoms from psychological symptoms. It is also important to differentiate between reactive anxiety/ depression and Clinical Anxiety/ Depression. Patients with autonomic dysfunction may very well experience reactive anxiety/ depression due to physical symptoms such as unpredictable fainting, and to emotions such as guilt, loss, and fear. This does not in any manner suggest that they are experiencing isolated anxiety or depression, nor that that is the nature of the problem(s).

      I underwent tilt table testing at Johns Hopkins on October 31^st, 2011. During testing, my blood pressure plummeted from a healthy 112 range in supine position to 60/40 range upon being raised to an upright position. I also developed tachycardia, which eventually dropped to around 100 bpm before suddenly plummeting to 60 (the lower limit of my pacemaker). If you would like more concrete evidence of tachycardia episodes, please refer to my last pacemaker interrogation report, as it showed rates of over 200 (the upper limit of my pacemaker is 180).

      I understand completely that you were not my physician when these problems arose. You did not know these details. That does not make it okay that you made such brash and flippant remarks. What is particularly upsetting for me is that I looked up to you in a professional manner. I knew from the age of four that I was going into a career in medicine. When I decided upon pediatric cardiology, you were more than helpful and supportive (Walk on Water is still my favorite book and has been referred to several of my pre-med friends). You always treated me as an adult, with respect and dignity: I admired that. You are a fantastic physician, and I am blessed to have been in your care. I just hope that you might take the time to learn about the Dysautonomia conditions so that similar incidents can be avoided in the future.

Sydney Taylor

                                                                Sources

[1] Wagner, C, Isenmann S, Ringendahl H, Haensch, CA. Anxiety in Patients with Postural Orthostatic Tachycardia Syndrome (POTS). 2012 Aug: 80(8): 458-62.

[2] Raj V, Haman K, Raj S, et al. Psychiatric profile and attention deficits in the postural tachycardia syndrome. Clin Auton Res. 2004;14:309.

[3] Roger, M. Dysautonomia and Psychology: Can they coexist? 2012. http://www.dysautonomiasos.com/#!psychology-and-dysautonomia/c20ox  "

I have had many other encounters with misinformed, dismissive, and just plain rude medical "professionals," but this was the proverbial straw that broke the camel's back. I was not as familiar with the other doctors and nurses who exchanged similar sentiments, but quite frankly, when it comes from someone who has taken care of and known you for your entire life, it becomes 100-fold more personal. You start to have serious doubts about whether or not you are actually ill, and not just a hypochondriac. But having had 4 pacemaker surgeries by the age of 8, illness and hospitals were things I avoided like the plague. I really did not need another reason to be sitting in the waiting rooms. 

I have not sent this, and I don't think I will. But, if you happen to be reading this and do not think POTS/ Dysautonomia are legitimate, physical problems, I encourage you to contact me. I will gladly rehash this entire letter, but I can't guarantee that it will be as civil. 

Good day to you,

Sydney