When You're Treated Like a 'Lab Experiment' Because of Your Illness

Pulmonary hypertension is the great impersonator. Before I received a
proper diagnosis, many medical experts tried to tell me I had
asthma, had been poisoned, or had anxiety. Pulmonary hypertension wasn’t even on their radar. When a young person comes in the ER with shortness of breath, doctors think asthma, not pulmonary hypertension. They hear hoofbeats, and think horse, not zebra.

People with pulmonary hypertension and other rare diseases are often described as medical zebras. This is based on a theory coined in the late 1940s by Dr. Theodore Woodward, who told his medical interns that “when you hear hoofbeats, think of horses, not zebras.” Horses are more common in North America that zebras, so the aphorism intends to remind doctors not to suspect exotic illnesses when commonplace ones are more likely. Although this is clearly not always the case, Dr. Woodward’s saying is still used widely in medical circles today.

The day I was diagnosed, I walked into a room with a medical student in it. I saw a student before the doctor (even though everyone but me was well aware of my diagnosis at this point). She asked me a bunch of questions, and examined my body in a few places, which is something to which I have reluctantly become accustomed. Having a rare disease makes me a good project for medical interns. These students are learning to question whether the hoofbeat is coming from a horse or zebra, instead of just assuming the most common diagnosis.

I feel disappointed every time I walk into a doctor’s office and see someone my age waiting for me. Doctors are forgetting that I woke up at 5:30 a.m. and drove two hours, and then waited in the waiting room for an hour and 45 minutes to see them. I want consistent treatment. Not to be treated like a lab experiment whenever I go for an appointment.

While I do want the future generation of medical professionals to know about pulmonary hypertension, it would be nice if I could give my consent. I have been seen by over a dozen medical students and interns by now. Unfortunately, this takes away from the quality of treatment that I receive. Medical students and interns will ask me the same list of routine questions I was asked upon diagnosis, and then they do the same physical exam. These questions are general questions asked during the diagnosis process. As someone who is nearly three years
past diagnosis, they aren’t exactly needed anymore.

As a result, I end up having a 30-minute consult with a medical student, who tries to explain to me what idiopathic pulmonary hypertension is (for the 57th time). The doctor then comes into the room, and the medical student recites the findings back to the doctor. I sit there listening as the medical student recites some of the information I gave back incorrectly, and adds in a few things that I never said. After the medical student tells the doctor that my heart sounds good, other than “that sound,” my appointment is over. The doctor never examines me. The doctor does not check me for heart failure, or to see if I am retaining too much fluid. The doctor never speaks to me, only the student. The doctor never gives me the chance to speak to him or her, or to ask questions.

As someone who tries very hard to be my own advocate, it is very
frustrating to go through this sort of “Groundhog Day” scenario of the
day I was diagnosed over and over again. I wish my consent was
needed to be examined by a medical student or intern. It is
disheartening to never fully have the chance to be seen by a doctor to discuss treatments, symptoms, and other issues, or to be given the opportunity to speak. I have become a case study, part of a student’s project, which strips me of the ability to be involved in my own healthcare.

Do you think patients should have to give their consent in order for a medical student or intern to examine them?

The article was first published on Pulmonary Hypertension News

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