Jun 4, 2012

Dear Doctors-An Open Letter to The Medical Profession

Dear Doctors,

I am writing all of you this letter because I have some "stuff" I need to get off my chest.  I know, I know; you probably don't want to hear another patient whining about some perceived mistreatment.  As an attorney, I get plenty of calls from people looking for a new lawyer because their old lawyer supposedly "wronged" them and they want me to help them get revenge and sue their old lawyer.  I don't usually take these people on as clients, because in most cases, they were not wronged, they just lost their case for other reasons. Well, don't worry, this isn't a revenge letter.  Think of it more as a pep talk.

I want health care reform, but not the type they are fighting about on Capital Hill.  I want health care reform in the way we educate our doctors and the way we treat and respect our patients - and that is MUCH easier to implement than anything they are discussing on Capitol Hill.

First, I want medical schools to give all you of a broader perspective.  I know the medical field is becoming increasingly specialized, as each field becomes more technical and our collective knowlegde in a particular fields becomes more complex and in depth.  However, most of you will not be Harvard or Mayo Clinic front line researchers - you are going to see real people with cardiovascular systems AND gastrointestinal systems, so you need to know about BOTH and how they interact!  I do not want any of you telling your patients, as one of my prior GI doctors told me, that you don't want to hear about my fainting, only about my GI symptoms.  This refusal to listen to symptoms related to organs or systems outside of his specialty lead to an almost two year delay in my diagnosis.  Believe it or not, my fainting and GI symptoms were caused by the same thing - autonomic neuropathy (yikes, a third discipline - neurology!) and it was all caused by a systemic autoimmune disease (paging rheumatology...).  I spent two years bouncing from specialist to specialist getting misdiagnosed with ailments in each specialists' field.  Rare was the doctor who looked at my symptoms or tests results outside of his or her field, but the one who diagnosed me accurately (POTS/autonomic neuropathy secondary to Sjogren's Syndrome) did just that.

Maybe from your first day of medical school you were 100% certain you wanted to be a cardiologist, but that doesn't mean you should snooze your way through infectious diseases and genetics, because chances are, many of your patients are going to have more than just a heart problem.  Some of them may have a heart problem because of an infection or a genetic disease - so please pay attention!

I also want medical schools to make you learn more about rare diseases - all those "zebras" you hear about, but are told not to look for "when you hear hoofbeats."  Rare diseases individually may be rare, but as a whole, it is not that uncommon to come across a patient with a rare disease.  The National Organization for Rare Disorders (NORD) notes that 30 Million Americans have a rare disease.  That is 1 out of every 10 Americans.  And keep in mind that your patients with rare diseases will be much less likely to identify their illness themselves.  Someone with broken arm usually doesn't need you to tell them they have a broken arm, but someone with a rare disease, one that the general public has never heard of, will really need your help to figure it out.

I also want medical schools to drill it into your brains that YOU DONT KNOW EVERYTHING AND THERE IS NO SHAME IN THAT!  Far too many of you are telling patients, "there is nothing wrong with you" when what you really mean is, "I do not know what is wrong with you."  If you encounter a patient with a long list of medical complaints and you can't find anything wrong with them, just confess that you can't figure it out.  Your patient will appreciate your honesty.  Then you can try to get them to see a doctor who can perhaps help them figure it out.  Some of you are already wise enough and confident enough in your own abilities to admit when you don't know something - and I applaud you for that.  I wish your peers would adopt this common sense approach.

Law schools teach lawyers that we should only take on cases that we have the experience to handle, and if we get in over our head, we are supposed to hit the books to gain competency in that subject or bring on an additional attorney who has the relevant experience.  For example, as an attorney who usually practices environmental law and policy, I would not take on a murder trial involving the death penalty.  It would be professionally irresponsible of me to do so.  But if asked to represent that murder suspect, I would not tell him he does not have a legal problem simply because I didn't understand it and didn't know what to do to help him.  Without hesitation, I would tell him that I am not qualified to help him, and then I would call the best criminal lawyer I know and ask him to take on the case.  Why is the medical profession different?  Why do so many of you tell the patient there is nothing wrong with them, just because you can't figure it out?  Don't you think that's pretty egotistical? Let's be realistic.  I'm pretty sure with all the specialization going on in medicine, there is no way even the most intelligent and sophisticated doctor could know everything there is to know about medicine.

Similar to the "there is nothing wrong with you" label, is the "it's all in your head" label.  Some of you are far too quick to dismiss your patients' health complaints as being just some mental issue of their own creation.  I find that quite amusing, since now that you are all so specialized, you probably don't have a great deal of expertise in psychiatry or mental health issues.  If you are a infectious disease specialist, would you diagnose a patient with cancer after a brief conversation about their symptoms?  Of course not! You'd runs some tests, maybe send them to an oncologist, run some more tests, and then maybe you'd confirm or rule out cancer or let the oncologist do it.  Unless you are a mental health expert, why would you make a mental health diagnosis before you really took the time to figure out if that is the actual problem?  I was told by several doctors in the first few months of my illness that all of these awful symptoms I was telling them about were just because I was anxious and/or depressed.  Without knowing me (they had literally spent maybe 5 minutes with me) they were surmizing it must be because of stress at work, or because I did not have a child yet, or because of marital problems or because I was co-dependent or just wanted attention.  None of these could be further from the truth.  I was on vacation in VT having the time of my life snowboarding and hanging out with friends in the outdoor hot tub when I suddenly woke up sick one morning.  I had (and still have) an awesome job doing exactly what I love (environmental law).  My wonderful husband and I were enjoying our double income no kids (DINK!) lifestyle for a few more years, living it up at our ski house in VT on winter weekends and as diehard surfer beach bums on summer weekends.  And anyone who knows me knows that I am a fiercely independent woman.  I went half way across the US and then to Europe without my parents in 10th grade,  Mexico with my boyfriend in 12th grade, and then I left my boyfriend back home to go away to college, and moved away from my husband to attend law school.  I definitely don't rely on others to tell me what to do.  In fact, my worst fault is probably that I have a hard time listening to ANYONE tell me what to do.  My penchant for resisting authority figures is probably how I ended up being an attorney in the first place.  I have a coffee mug at work that says "well behaved women rarely make history."  Funny enough, someone also bought me a plaque that says the same thing to hang above my desk.  Maybe my friends are trying to tell me something...

So, this is probably the thing that upsets me most about the medical profession - the rush to judgement that it must be all in the patient's head if the doctor can't figure it out after a few standard blood tests.  To be fair, it's not all of you.  Most of the doctors I saw did take me seriously and did try to help me.  But I am furious at those few that told me it was all in my head, and then proceeded to give me medications that I did not need and were in fact quite dangerous for the underlying condition I had, that they didn't bother to figure out.  I am furious because in my desperation to feel better, I let my guard down and trusted them and took those god awful medicines and almost started to believe that all of this was in my head.  They almost made me lose faith in myself, which is worse than all of the physical symptoms I have had combined.  Thankfully, I was emotionally strong enough, and smart enough, to see that those naysaying doctors were the ones who needed their heads examined, and perhaps their medical licenses as well.  I picked up the pieces of my shattered self after they made me teribbly sick with just a few days of their dangerous pills, and I moved on, to find a doctor who actually knew what he/she was doing and actually cared.

If this had just happened to me, it would be easy to dismiss as one bad doctor and one unfortunate circumstance - just bad luck on my part.  Well, sadly, almost every single POTS patients I have ever spoken with or read about had the same experience with numerous doctors.  I even read one journal article (yes, believe it or not, people who did not go to medical school are smart enough to find, read and understand peer reviewed journal articles) that found 97% of POTS patients had been misdiagnosed as just having anxiety and/or depression prior to their correct diagnosis of POTS.  How can there be hundreds, if not thousands, of doctors dismissing very serious health problems, like syncope, tachycardia over 150 bpm, crashing low blood pressure, severe GI symptoms and more, as all in the patients head?  I know how - because most POTS patients are young women who "look fine," and there is some residual sexism still left in medicine, even if we don't outwardly refer to it anymore.  Misdiagnosing 97% of the 500,000 to 1 million Americans currently living with POTS (80% of whom are women, most of whom are under age 30) sounds not too far removed from those horror stories you hear about Victorian women in the 1800s being thrown in a padded room for "hysterics" because they complained about menstrual cramps.

And hey, I'm not saying you're never going to see a patient who has a serious anxiety disorder and/or depression, and I'm not saying that out of the 500,000 to 1 Million people with POTS, none of them have anxiety or depression.  But peer reviewed literature (which I really wish you would read when patients like me bring it to you) makes it clear that POTS patients are no more anxious than healthy controls.  And sure, you will probably get a few patients now and then who are actually hypochondriacs or maybe even some that have Muchausen Syndrome or another factitious disorder - but these are supposedly just as rare as the physiological "real" rare diseases you seem to have such a hard time diagnosing.

Many times when I went to the ER, I would end up with a well intentioned but clueless resident and even though all I needed was some IV saline for my orthostatic intolerance and hypotension, I was usually offered a Xanax because they thought I was "just having a panic attack."  I was not, and I knew it, so I would refuse the Xanax.  Then I would have to defend my decision to the doctor about why I didn't want to take it (and thus was labeled as an uncooperative patient in addition to a panic attack patient).  A little fact you ER docs need to learn about panic attacks, and I'm sure they must have covered this in medical school, maybe in the fine print in the back of the abnormal psych textbooks - blood pressure does not drop to 60/30 during a panic attack!  Panic attacks result in INCREASED blood pressure.  Many, but not all, POTS patients have really bad POTS symptoms when their BP drops too low, and this is when they are most likely to end up in your ER.  Please learn to distinguish this and stop handing out Xanax like candy - you've already got enough of America addicted to that awful stuff!

Next, I'd like medical schools to require you to pass a "bedside manner" test.  You should not be allowed to practice medicine unless you have achieved and can maintain a certain level of bedside manner - even if you have to fake it.  Your score in this area should be generated by the actual patients you treat during your residency.  If enough of them think you have a terrible bedside manner, you should not be allowed to practice medicine on real patients.  Back to cadavers for you, or better yet, become a lab researcher so you don't have to see real people everyday.

For some reason, a good bedside manner is considered an "old fashioned" concept in medicine.  Why is that?  Have patients suddenly started asking for rude doctors?  Does the latest research show that the patients of obnoxious doctors' recover quicker than do patients' of polite doctors who enter a room with a smile?  I'm not asking for much here.  I don't need a new best friend or drinking buddy.  All you really have to do is respect your patients, or at least have the decency to act like you respect them.  You should not interrupt their questions.  You expect them to listen to you, and thus you should listen to them.  You shouldn't roll your eyes at them, even if they ask a stupid question.  You shouldn't begin looking at your watch 5 minutes after the appointment starts.  If you are a senior doctor or a Professor working with young residents, don't scold them for being polite.  A young doctor was placing barium in my mouth for a test and she accidentally spilled it on my cheek and my shirt.  She politely apologized and grabbed a tissue to help me clean it up.  Her supervising physician sternly scolded her, right in front of me, "don't ever apologize, it makes you seem unprofessional!"  Really? When did basic manners and politeness becomes unprofessional?  In fact, in any other profession, if you dropped sticky white goo all over a client or customer's shirt and didn't apologize, it would be considered extremely unprofessional.

I don't want you to think that I am angry with all doctors.  I am not.  In fact, I have the best General Practitioner anyone has ever had on the face of this planet and I really adore her.  Her awesomeness makes up for a least half of the obnoxious, narrow minded doctors I had to deal with over the past two years.  I just want the medical profession as a whole to do a better job in dealing with real people.  Stop treating symptoms and start treating people.  And I would appreciate it if you could learn more about those medical "zebras." We are a herd 30 million strong, and someday, you or someone you love may be one of us.

That all for today's pep talk.  Next time, I will be giving your medical colleagues working for the insurance industry a "pep talk" (but just between you and me, I would prefer to give them a beating).




  1. Zebras/hoofbeats (have also heard "horse klops")- check. Bedside manner - check. Running from specialist to specialist - check. It's all in your head - check. Take a xanax, valium, prozac... - check. Admit that you just don't know, instead of blaming me - check. Yup, you got 'em all. Excellent work!

  2. Can I give you a standing ovation? What worries me the most in all this is those patients who can't advocate for themselves or have no one to advocate on their behalf. Those of us who are educated, confident and assertive have heard the "it's all in your head" and the rest, but were able to say "screw you" and continue the fight to appropriate diagnosis. (Not that anyone should have to fight for diagnosis and treatment when we are so ill). How many simply take the doctor at their word, blame themselves when they don't get better etc? Addressing even a few of the points you raise would catch more of those who would ordinarily fall through the cracks and make an already difficult situation a bit easier for those who although able to self-advocate are working with minimal reserves.

  3. Great Letter! Unfortunately sooo true and your 2 years was quick compared to my 4. Now how do we get the professionals to actually read it? It seems some docs even the best ones are in such a hurry they miss LOTS on test results getting them to read this might be impossible. I too have Sjogren's and POTS/AN and while it took 4 years for a DX I am still searching for help because of this very reason,(currently 10th year) the Rheumy says it is Neuro, Neuro says it's Rheumy, and the Gastro says it could be both or neither so my adventure is on going and hopefully close to help. Thanks for all you do! Niki

  4. Dear Niki,

    We have a Facebook group for people who have POTS and Sjogren's. There are quite a few of us and we are growing. Find me on Facebook and I can add you to the group. You can "Like" the POTSgrrl Facebook page and then send me a note on the page. I will friend you and add you to the group.

    I had the same thing - I had a neuro and a gastro and a rheumy and they all acted like the other doctor should be handling my treatment. They still do that to some extent, but I have learned to be more demanding and not let them get away with that. If you have POTS and Sjogren's, it probably is neuropathy caused by your Sjogren's (and/or another autoimmune condition since they pile on; once you get one, you get another). You should ask the neuro and rheumy about IVIG. There is info elsewhere on my blog about this. Use the search feature up top.

  5. i think you just summed up everything I hate about medicine in one page! well done! I don't know one POTSy who hasn't experienced what you did at some point in their diagnosis and treatment history and it's just wrong. Love your comparison to menstrual cramps in the 1900s- it's so true. Why are we told we're crazy when it's really physiological! this is just ridiculous! I'm afraid that even if the number of POTS specialists grows, diagnosing POTS is still going to be a nightmare unless we change the medical mindset!

  6. Thank you for writing this...I was told for over 10 years that I was just suffering from anxiety and migraines and I found out just 1 month ago that I have POTS. I went to PCP because I couldn't deal with feeling awful anymore and they gave me a 5 minute appt to tell me they thought I just had hypotension and to drink Gatorade. I took it upon myself to call a Cardiologist and make an appt because the chest pain, tachycardia, lightheadedness, fatigue and everything else had me so freaked out. He took the time to have me wear a holter monitor, take an echo stress test and do a tilt table...that tilt table test is what finally diagnosed me. I see an electrophysiologist in 2 weeks and I really hope they can fix this because I am so tired of feeling sick...10 years is enough.