Doctors Aren’t Always Right But Some Doctors Just Want Their Money (10 Months Later)

Last June, I went to the worst rheumatologist appointment ever (Read: The Storm After Years Of Calm).  And I thought, now that I have a new rheumatologist that I like, that I had put it behind me.  But to my surprise and chagrin, a few weeks ago, I received an explanation of benefits from my insurance company stating that I owe over $300 for labs that my insurance plan isn’t paying for.

First of all, why am I getting billed for this now?  It is April of 2018 and this appointment occurred in June of 2017.  Second of all, no, just no.

I will not be taken advantage of this way, especially since after the tests were run, I found out what they were and they were totally unnecessary.  Tests were run for multiple myeloma (makes no sense), and for a doctor that didn’t seem to believe I have lupus and RA, she ran no confirmatory tests for the illnesses that I ACTUALLY HAVE (Read: I Do Have Lupus And RA After All...).

So I contacted the person who is our designated contact at the insurance company.  She proceeded to attempt to school me on what a deductible is and that mine hadn’t been met yet, hence the charges.  I calmly explained that I know what a deductible is and all of that, but that’s not what I was questioning.  I asked if I could appeal, and was told that I had 60 days from the date of service to appeal.  I asked how it was fair that I could be billed for services 10 months later but only had 60 days to appeal?  We continued to go back and forth, with her being incredibly dismissive and disrespectful to me.  I finally asked to be contacted by a supervisor.  I’m still waiting.

(Also note that since this appointment took place last year, it would have counted toward that deductible, which I met.).

I also contacted the person that administers our insurance, and was told that my best bet was to contact the provider.  I explained that in order to spare myself further mental anguish, that was definitely not an option.  In fact, I have attempted, on at least six occasions, to contact the medical group administration, without success.

I have no intention of engaging with this provider ever again.  And I have no intention of paying any bill I receive now for lab work or anything else associated with that appointment.  It’s nearly a year later at this point.  And I was trying to move on from that appointment, which set me back a lot, both physically and emotionally.

It is unbelievable to me that doctors can provide subpar care and nothing can be done about it, unless it gets to the level where you have a lawsuit.  It seems that, that is the only way that patients can get any sort of vindication.  I can’t reason with a terrible provider.  I can’t get a direct line to anyone at the office above the provider.  I can’t get any assistance from my insurance company.  So what am I supposed to do?

I would love to work for an insurance company and advocate for patients in my position.  I would love to be able to contact a provider and say “you have to write off this bill because the patient was not treated well, and neither them nor we are going to pay for it.”

Clearly, there is a reason why I have not and will never see this provider again.  It is not like I have gone back multiple times to see her.  And I pay all my bills.  As long as the services are rendered properly, I have no problem paying.  But when services are rendered far below where they should be, I am going to fight that, especially when I had assumed that everything was done and paid for.  It’s a bit strange that 10 months later they are coming after me for money, but this provider has never contacted me to see if I was coming back to see her again or not.  I guess the loathing was mutual.

It’s also interesting because my insurance is claiming that they’re not paying due to the diagnostic codes.  Which brings me back to the beginning.  Of course, because the tests don’t make sense for the diagnoses I have and am being (successfully) treated for.  So you see, I am being sent in circles.  Once I knew what tests were run - after they were done and I saw the results - I knew they were totally unnecessary.  But this doctor was so convinced that she was right and I was wrong that she went on a very pointless (and expensive) fishing expedition.

And this is where the medical profession and the insurance industry get it wrong.  That this doctor’s experience in medical school trumps my near decade as a patient living with lupus and RA is absolutely ridiculous.  And that I should be the one to have to pay for the fragility of her ego is even more ridiculous.  She made an error.  It was a grievous one, but thankfully I’ve had a (correct) diagnosis for long enough to know that she was wrong and that I wouldn’t put up with that kind of treatment from any physician.  So I cut my losses, now she needs to cut hers.

I Do Have Lupus And RA After All…

16 days after my appointment took place, the new rheumatologist that I saw called me with my test results.  Keep in mind that these results were available on the patient portal, which I was given access to immediately after my appointment.  So in reality, these results were ready between one and five days after my appointment took place.  They were results that I had already seen. 

Results that showed the following:

-         Elevated ALT

-         Elevated AST

-         Elevated ESR

-         Elevated Hematocrit

-         Elevated Hemoglobin

-         Elevated Potassium

-         Elevated Protein

-         Elevated Sjogren SSA Antibody

-         Elevated Vitamin D

-         Decreased Lymphocytes

But that’s all totally normal, right?  She also ran tests for multiple myeloma.  She didn’t even tell me she was doing that.  Thank you, Dr. Google.  If that was really the case – if I had cancer that had gone untreated for nine years – I’d probably be dead.    

And what she didn’t test for was also telling. 

No ANA.  No Rheumatoid Factor.  Confirmatory diagnostic tests that should have been run, especially since in person, she didn’t believe that I have lupus and RA.   

Why it took her 16 – yes 16, not seven, not 10, not 12 – days to contact me, especially when I had left several messages for her, is beyond me. 

Of course, when I talked to her on the phone, she had changed her tune a bit.  She told me on the phone that my diseases are stable.  And I really wanted to say, “Oh!  You mean the diseases you told me that I may or may not have?”  But I didn’t.  Inside I seethed.  But over the phone, I tried to remain calm.  With everything she said, I replied with something like “okay” or “uh huh”, the way you respond to someone who you’re supposed to respect but don’t. 

The first time she called me – Day 16 – was on a workday at 10:15 a.m. on my cellphone, so I missed the call since I can’t have my cellphone out at work.  She had my work number and I had told her she could call it, but she didn’t.  It’s like, yes, I’m sick, but I work.  Sorry if that’s so hard to believe.  We finally talked on Day 17.  But I wasn’t counting or anything.  I’m immortal.  I’ve got nothing but time.

She also gave me numbers from the labs that were wrong – I had seen them all already and had pretty much memorized them.  And someone kept coming into her office while we were on the phone and interrupting her, so she kept telling me to “hold on.” 

Not only did she have no regard for me as a patient, but she also had no regard for me as a person. 

I knew that nothing she would say would come as a surprise.  And nothing she could say or do at this point could hurt more than our first encounter.  And nothing she could say or do could repair the damage that was done during that first encounter.

To the point where that first encounter will likely be the only encounter.  It was the first and likely the last.  I wish I could say it never was.  But it’s not that easy to shake off.  To be told after nine years that you don’t have the diseases you think  you have, and that you’ve been misdiagnosed and treated incorrectly, when the person telling you this has no evidence to base that determination around other than some mysterious beef with your old rheumatologist, it’s truly the stuff of nightmares.  It’s the kind of thing that I know happens to others, but I didn’t really think would ever happen to me.  But clearly I’m not immune.  And clearly after all these years of craziness, I can still be surprised…in a bad way...  

I entered that office with hope and I left with desperation.  Doctors have power, and this particular doctor used that power for evil rather than for good.  I’ll never really know why, but I’m 99% certain that she is not the doctor for me.    

I’ve already made an appointment with a different doctor at a different practice.  I made that appointment on Thursday and received the paperwork in the mail on Saturday.  The doctor’s office that I went to claimed to have sent me their paperwork twice and I never got it.  I’m noticing a difference already. 

I understand that everyone wants to be the hero in someone’s life.  But after nine years of living with lupus and RA, I am never going to be that person for this doctor, or any doctor.  I need management, not diagnosis.  I need compassion, not reaction.  I’m not a science experiment.  I’ve been there and I’ve done that. 

This is my life.  And lupus and RA are an excepted and recognized part of that life. 

I knew in my head and my heart that this doctor was wrong.  She made pronouncements without evidence or reason.  And when it came down to it, she wouldn’t even admit that she made a mistake.  All she could do is tell me what I already knew.  That my diseases are much more stable than they were nine years ago.  That they are in a different state, and yet they are same.

I have lupus and RA. 

July of 2017 is no different than April of 2008. 

Same story, different day, different month, different year. 

And I can breathe again. 

You can’t throw the baby out with the bathwater, not when the situation doesn’t call for that.    

This chronic illness thing is not a static journey but an active one.  No matter how much we hurt or how fatigued we are, we go on.  And we deal with so much crap along the way.  We let others inflict hurt upon us in the name of health.  We let doctors literally “play” doctor.  We find people we can trust, and sometimes we find people that we cannot.    

I knew I didn’t need Arthritis Foundation brochures about lupus and RA.  I could have written those brochures.  And if you think about it, I spent eight years in graduate school and I’ve been sick for nine years, so that’s 17 years worth of experience.  I think that might just trump medical school.  And if that doesn’t, well, it’s my body.  I think I am more of the expert in that than anyone. 

If anyone’s keeping score, I won this round.  But I’m back to the drawing board as far as rheumatologists are concerned.  I can only hope that the next appointment with the next new doctor goes better than the last one did. 

(I also had an issue with my insurance and needed a different prescription for one of my meds.  Neither she nor her office could seem to be bothered with that.  Somehow, my old rheumatologist took care of it.)

And in case you’re are wondering or missed it, I had an incredibly successful nine year relationship with my last rheumatologist – you can read about it in the post, “A Thank You Note To My Rheumatologist”.  Losing him is literally the only reason I would put myself through the hell of finding a new doctor.     

Bye, bye brochures!  Enjoy your time in the landfill.

“Nobody said it was easy,

No one ever said it would be this hard.”

-         “The Scientist,” Coldplay

The Storm After Years Of Calm

What’s one of your worst fears?

One of my worst fears, for as long as I have been chronically ill, is seeing a new doctor who disagrees with my diagnoses.

That’s exactly what happened yesterday.

My old rheumatologist is leaving the state so I needed to find a new one.  I opted not to stay within the system my old rheum was in because he and I talked about it, and it wasn’t particularly convenient for me proximity-wise, and he had heard of the doctor that had previously been recommended to me by a family friend.  He felt that my illnesses are at a stable enough place where I didn’t need to stay within the same system if I didn’t want to.

I’ve been waiting several months for this appointment.  My hope was to get in while my old rheum was still practicing, but that didn’t happen.

So finally, the appointment was yesterday.  I went in feeling very prepared.  I had a notecard with my current medications and a notecard with my past medications.  I had a list of hospitalizations and procedures.  And I had a list of current issues that I wanted to make sure I touched on.    

I wasn’t prepared.  Not by a long shot.

This appointment felt eerily similar to my first appointment with my old rheum.

Questions being thrown at me rapid fire.  Asking me why I had listened to my previous doctors, all the while expecting that I am going to listen to everything this new doctor is telling me. 

It felt the same.  Almost.

Except that back nine years ago, I was on a quest for answers.  And now, this one appointment has seemingly refuted or called into question everything that, that appointment nine years ago sought to make clear.

That I thought was clear.  That I had accepted as given.  That I had accepted as my life.    

This appointment was 50,000 times worse because this doctor refuted the last nine years of my life.  Like it’s a lie.  Like it’s some kind of joke that I haplessly fell for.  Nine years. 

Nine years of experience can’t be wrong, can it? 

I know how I felt then.  I know how I feel now.  I know that I’ve been on a lot of medications that did not work.  And I know I am currently on a regimen that is keeping me feeling reasonably well. 

Basically this new doctor is saying that I may have lupus and RA, but I may not.  And that she is 100% sure – from NOT looking at my records, not having any current labs or x-rays – that I have fibromyalgia.  But as for the rest, it’s up in the air right now.

So if I don’t have lupus and RA, how does one explain why the medications I’m currently on have worked and have made me feel better?  Clearly it’s not just a placebo effect, that the very act of taking pills makes me feel better.  Because I’ve been on plenty of medications that have made me feel far worse.    

It’s not like being told you have cancer and then someone saying that, actually, you don’t.  That is probably the kind of news that most people in that situation would be glad to hear.

It’s not as if lupus and RA are small potatoes.  I would love not to have these illnesses, or any illnesses at all, for that matter.  But I do.  And I’ve been working within the confines of these diseases for nine years. 

Everything makes as much sense as it seems life ever makes with lupus and RA.

I know who I am with these illnesses.  I’ve accepted the life I will have because of these illnesses.  In many ways, I am who I am today because of these illnesses. 

Take that away, and who am I?  I don’t know.  The hurt and confusion that I’m experiencing right now is deep. 

It’s not like the things this doctor is saying click and make sense, and I’m finally seeing everything clearly for the first time in nine years.  In fact, for the first time in nine years, since I was diagnosed, I feel the way I felt before I had a diagnosis, before I had a name and diagnostic code to slap on myself.  I feel lost and scared.

I’ve felt lucky that I had labels to put on my diseases and that I had concrete evidence for having those diseases.  Is it possible that my lupus and RA are in clinical remission, but I’ve developed fibromyalgia secondary to that?  It wouldn’t surprise me, if, after spending so much time in pain, that my body misreads the pain signals and creates pain even when it’s not actually manifesting in my organs and joints. 

But to say that I don’t have lupus and RA at all and that I never actually did?  I truly don’t know what to say to that.  It’s incomprehensible.    

I’ve built the last nine years of my life around these illnesses, and for that to be taken away?  It’s unexplainable.  It’s devastating.

I’m not a science experiment.  You can’t just act as if what I’m telling you and what I’ve experienced doesn’t matter.  I know my body better than some doctor that I’ve never seen before and who literally knows nothing about my history. 

So maybe at our next encounter, maybe I will stand up and fight harder.  But I was so taken aback, so crushed, that all I could really do is sit there and shake my head.  Like is this really happening? 

I got beat down.  And I slowly have to get back up.  I’m trying to convince myself that no matter what, I belong in and to the autoimmune disease community and that all of the work and advocacy I have done over the last nine years matters.  And it breaks my heart to think that, that might not be the case.    

The worst part of the whole interaction was that there was no care or concern.  It wasn’t that this doctor seemed genuinely concerned about me being on medication that I don’t need to be on or that I had been treated unsuccessfully for two diseases for nine years and now it was time to find answers.  It seemed like she just wants to be right.

And I’m not convinced that she is.

And I have to wonder about her end game.  Does she want me to go off of my meds to see what happens and how I and my labs look without my current medications?  I don’t think I will be functional for a week without them.  I’m not sure I’d even be functional without them for more than a day.  

Maybe it’s too soon to be writing this post.  None of the labs or x-rays are back.  But I had to get it out.  I had to turn to the one place that I have documented everything since this journey began nine years ago. 

I think part of the most insulting thing is that when I was leaving, she handed me three brochures created by the Arthritis Foundation – one for lupus, one for RA, and one for fibromyalgia.  I will read them, cover to cover, only so that I can note down all of the symptoms that I have to prove a point.

But I don’t need them.  And I don’t deserve to be handed them as some consolation prize.  I’ve been doing this for nine years.  It’s insulting that that’s the impression she got of my knowledge of my own illnesses.    

But when your bedside manner paralyzes a patient and takes them back to where they were when they had no clue what lupus was and thought arthritis only happened to old people, that’s a problem.  When you take someone who is stalwart at advocating for others and cause them not to be able to advocate for themselves, that’s a problem.  And honestly, that’s on her, not me.  So let’s get one thing straight.  I am not that scared 22 year old that I was when I was diagnosed.  I’m a stronger, better person than I was then.  And I need to muster my strength because apparently, I’m literally and figuratively just getting started.  

(I had originally planned after the appointment to try my hand at vlogging, but that’s not happening because I would just be a hot, crying mess)

A Thank You Note To My Rheumatologist

At the end of February, I went to see my rheumatologist in Ann Arbor.  When I moved back from New York, it was an easy decision to start seeing him again.  I couldn’t see him right away since I had Medicaid, but once my insurance through work kicked in, I was able to start seeing him again this past August. 

I thought we were going to have a fight over the pneumonia shot.  That was the fight I was prepared for.  But I wasn’t expecting him to say what he did.  He’s leaving the state. 

Since I live about 45 minutes outside of Ann Arbor, it’s not super convenient anymore, especially since I currently don’t drive.  But aside from the rheumatologist I saw in New York, this is the only rheumatologist that I’ve had.  He’s the one who diagnosed me.  He’s the one who believed that my symptoms weren’t all in my head.  He’s the one who at our worst helped me become an empowered patient, and at our best, showed me that you can build a relationship with your healthcare provider.

It’s crazy to think that this month, I will have been diagnosed “officially” with lupus and RA for nine years.  At my appointment, when he kept saying we’ve known each other for the better part of a decade, I thought yeah right.  But it’s true.  And I know I have joked before, but this is the second longest relationship I’ve had with a man, and the first longest was with my dad.  So despite the ups and downs we’ve had, there’s something to be said for building lasting relationships with our health care providers.   

*****

Dear Dr. R.,

I’ve been thinking a lot about the news you gave me at my last appointment.  Oddly, it wasn’t news that had to do with me or my health.  It had to do with you.  And it wasn’t news that I was expecting.  When you told me you were leaving, I think the air was sucked out of the room.  But I harbor no hard feelings.  You do what you have to do.  And it really touched me that you got emotional.  That meant a lot.  So now I’m doing something that I hope will mean something to you. 

Rarely do I write thank you notes to medical professionals.  It’s not because I don’t have gratitude or appreciation, because I do.  But rarely do they truly deserve it.  You do.

You are one of a few people who got me to where I am today.  It is with your help that I can say I got two master’s degrees and a PhD, while battling lupus and RA.  Well, let’s be honest, most of that was my dogged and pig-headed determination.  But if you hadn’t been willing to pursue treatments and understand my goals and what was important to me, I wouldn’t have been able to do any of it.  And we both know that all along the way, it certainly wasn’t easy.  But I hope you agree that it was worth it.

Like Max Kellerman says to Baby in “Dirty Dancing,” “If it weren’t for this man, I’d be standing here dead.”  I truly believe that if it weren’t for you, my quality of life would be significantly diminished.  Or maybe I wouldn’t have a life at all.

I truly don’t know where I’d be, but I cannot imagine the last nine years without you.    

I know we haven’t always agreed on everything, and maybe we weren’t even too fond of each other at first.  But you diagnosed me with lupus and rheumatoid arthritis.  You saw me through the worst of it.  And you’ve also seen me at the best place I’ve been, so I’m glad you’re leaving on a high note. 

I can only hope that I find another rheumatologist to spend the next decade with.

There’s more I want to say.  But it’s hard to find the words.  Because how do I adequately express what you’ve done for me?  I can’t.  I truly can’t.  So I’ll leave you with this.  Two words.  The most simple, yet profound words I can come up with.  Thank you.  Thank You.  THANK YOU. 

Please let me know if there’s someone I can forward this letter to, because I’d like others to know the profound impact you have had on my life.  I know you don’t do what you do for recognition.  And I know it must not be easy to see people day in and day out that you know you can maybe help but probably never cure. 

So please know that you make a difference.  You helped a scared 22 year old who thought her life was over.  Thank you isn’t enough, but thank you.     

With much gratitude,

Leslie Rott 

*****

Now I embark on the path of trying to find a new rheumatologist. 

It’s not something I’m excited about, but I don’t have a choice.  I actually had been told about one prior to finding out my rheumatologist was leaving, but had made the decision to stay with him because of the history.

Now I just have to bite the bullet and make an appointment.  

Are We All Just Paying To Die?

I wrote a post in September, Doctors Are Part Of the Problem, But They Can Also Be Part Of The Solution, about a terrible appointment I had with my (previous) primary care physician (PCP), in which I was degraded and basically accused of faking my illnesses. 

But then the situation got a little bit worse. 

BECAUSE I GOT BILLED FOR IT. 

Not only that, but it was a bill for $125 for an “extensive physical examination.”   

When I get bills, I pay them.  Even when the amount is painful.  Even when the bill gives me sticker shock and I see red.

AS LONG AS SERVICES ARE RENDERED.

But if you try and charge me for services that were not rendered – and that we both know clearly were not rendered – I will fight back. 

(Cue “Ferris Bueller’s Day Off” – This is where Leslie goes berserk)

All I received was a lecture, and a misguided one, at that.  And then, to add insult to injury, I was billed for it.

I still can’t get over it.  Clearly.  The gull of the doctor.  Apparently he didn’t realize who he was dealing with.

I was so angry that I handwrote a letter.  I just couldn’t stop myself. 

I’ve included the letter here, both pictures of the handwritten version (which I promptly sent) and the text so you can read it (names have been redacted).

***** 

To Whom It May Concern:

I will NOT pay this bill.  On this date, at this appointment, there was NO examination.  Nothing was done other than Dr. _____ yelling at me for no reason.  I was accused of faking my illnesses.  I’m sorry that your office staff sucks, but as a patient, that is NOT my problem, and should not be taken out on me.  You can send this bill to collections if you are that petty, but I will fight it.  If Dr. ______ cares at all about anything other than the bottom line, this bill will be wiped.  It’s the right thing to do and he knows it.  My _____has an established relationship with Dr. _____ and I don’t want this to impact their relationship.  However, if this bill does not disappear, there will be a big problem.  I’ve never been treated the way I was that day by any doctor ever.  And I’ve seen a lot of doctors.  I will not pay money for services that were not performed.  That borders on malpractice.  I sincerely hope other patients will not be treated the way I was.

Leslie Rott

*****

Should I receive a call from a lawyer or a collection agency, I will be happy to them exactly why this bill will not be getting paid, and why, quite frankly, this doctor should not be practicing medicine. 

Additionally, I recently learned that, bloodwork I had put off and then had done, even though I have since made the decision never to go back to this doctor, not only did not confirm his belief that I was faking my illnesses, but did confirm my belief that he believed I was faking my illnesses. 

He ran a variety of tests, including anti-nuclear antibody (ANA), which is a diagnostic test, a confirmatory test, for autoimmune diseases, like lupus and RA.  If he was really curious, this is a test that he would have run when I first started seeing him.  But no.  There’s something cold and calculated about him running that test when he did that makes the situation all the worse.

I always knew that doctors like this existed, but I had never experienced one firsthand. 

Aside from the moral problems I have with this entire situation, I also have a practical problem.  Unfortunately, sick people need doctors.  I am chronically ill, and as a result of this situation, I no longer have a PCP.  And based on my past negative experiences – although this one being the most negative – I’m not too excited about finding a new one. 

But I need one.  And it feels like a lot of work. 

So I am left to wonder.  Are we all just paying to die?

Are we all paying to stay well and avoid becoming ill at all costs?  And then when we get sick, are we paying not to die?  Which, in the end, leads to the same, unfortunate, inevitable conclusion?

My Bubbie passed away at 90, and was pretty healthy until almost the very end.  But I watched the end of her life become the most physically and emotionally painful, and also the most costly.  I am 31.  I am not healthy.  So by that calculation, I will pay and continue to pay not to die.  The most costly times, health wise, are still in front of me, and in the end, I will die anyway.   

I can only fear that in our fast approaching new political climate, this situation is only going to get worse.  We will get poorer quality services at a greater cost to us.  And in the end, we will be sicker for longer, and we will die, sicker.    

We’ve already seen what happens when people in power use it against those who do not have that same power.  I’m not trying to get political here.  But I am using my voice.  And unfortunately, even though one of my New Year’s Resolutions for 2017 is to get un-angry and to focus on the positive, one power I do have is not to stay silent and to expose medical “ills” where I see and experience them.  Therefore, I am sharing this experience, despite the fact that very little good can be found in it. 

Because doctors like this are not doctors at all.  They use their power for evil instead of good.  They give the medical profession a bad name.  They make patients feel badly about themselves, they accuse patients of faking their illnesses, when they, themselves, in fact, are playing the system.  They are charging patients for services they did not render in the hopes that no one will have the time, will be too sick, or will not pay enough attention to take a stand and fight back.   They also make those who are healthy feel that doctors are too cumbersome, so they avoid them at all costs, until they become sick and have no choice.  

Doctors Are Part Of The Problem, But They Can Also Be Part Of The Solution

“Are you a good witch or a bad witch?

Who, me?  Why I’m not a witch at all.”

There are good doctors and there are bad doctors.  I’m not a doctor – well not that kind, anyway – but recent experience suggests that maybe I should become one.

On Saturday, I had a follow up visit with my primary care doctor.  To put it mildly, it went terribly.  He asked me one question, I answered truthfully, and he freaked out.  He basically told me that if I coped better with life, I wouldn’t be sick. 

Well isn’t that rich?  Is that your many-years-of-medical-school-medically-informed-opinion doctor?  Because if it is, you need to go back to school.  And if it’s not, you need to stop.  Just stop. 

You know, when he learns what it’s like to become chronically ill in his early 20s and lose his dad on his 29^th birthday in a very traumatic way, then judge me.  But until then, don’t – and oh wait, he can’t because he’s already way past that.  All things considered, I think I’m doing pretty well.  And I am not perfect my any means, but I don’t deserve to have some doctor’s petty resentments projected onto me.  That’s not right and it’s not fair.    

I barely held it together in the appointment.  I should have stood up for myself.  Or I should have just walked out.  But I didn’t.  I sat there, trying not to cry.  Trying not to scream “You have no idea what you’re talking about!”  But I clammed up, I closed off, and I didn’t know what to say.  I don’t think I’ll ever go back to him again. 

This situation reminds me why I sometimes hate doctors, and why I sometimes go through phases where it all just gets to be too overwhelming and I have to take a break for a while. 

Whenever that happens, I get delinquent about doing the preventative things I’m supposed to.  And then things happen, and I’m rocked back into reality and the fact that I have a crappy immune system and all that comes with it. 

And maybe that’s because I’ve had a lot of bad doctor/medical professional experiences, not just the one I just described.    

Here is a case in point:

Not long after I got sick, I had a yeast infection. It was really bad.  I’ve never had one like that before or since.  My only choice was to go to the walk in clinic at student health.  I saw this nurse practitioner who was asking me questions and basically told me that since I had lupus and RA, why was I even thinking about having sex?  Like sick people can’t have sex?  I was so shocked, I didn’t really react or fight back. 

Honestly, I’m still traumatized by that one.

But then I have experiences like today, that renew my faith in the medical profession, and make me realize that there are good doctors out there, and that we need to work together to improve healthcare. 

I finally went to the gynecologist, after too long of not going (read several years).  And I had to see a man, which I wasn’t thrilled about.  But it went very well.  The doctor was very thorough in taking my medical history.  And he really understood the complexity that is my chronic illnesses.  He was very non-judgmental.  And his office staff was very professional.  I was very impressed.  I left feeling very good about the appointment, which you can’t generally say about the gynecologist.  And thought, why can’t he be my primary care doctor?  

I’ve learned that the office staff at a doctor’s office says a lot about the doctor.  So this doesn’t bode well for my primary care doctor. 

Aside from the situation I described, I received a notice that my new insurance had been billed for an appointment when I didn’t have that insurance, so of course they rejected it.  I’d called my old insurance, and they stated they had never even received the claim.  Getting anyone from my primary care doctor’s office to deal with it has been a huge problem, so in retrospect, I shouldn’t have been so surprised about Saturday because I suspect that some of what went on was a result of having to basically fire his entire office staff.    

But regardless, if I’m having a bad day, I cannot treat my clients the way my doctor treated me.  So even if, as I strongly suspect, the behavior wasn’t actually directed at me specifically, it doesn’t make it okay.  It’s unacceptable. 

And if the billing issues that I experienced are such a widespread problem for this doctor, then I believe the doctor should have sent a letter out to all patients, explaining the situation and that they are trying to rectify it.  But rather than act responsibly, he decided to take it out on me. 

I’ve spent a long time feeling like improving healthcare falls squarely on the shoulders of patients.  But I think that doctors can help with this, too.  And they should.  Rather than taking anger and frustration out on an individual patient, talk to Congress.  Explain that while a practice manager used to be a master at insurance, the system is too fractured now and confusing, that it’s impossible to stay on top of it.  And not only does it make it difficult for the doctor and his staff, it also makes it difficult for his patients. 

For patients like me, who had to make seven calls to his office, only to find out that he fired his old biller, which seemed to be the standard line.  Five messages went unanswered, a call to a person told me that they would reach out to their outside biller and she would get back to me.  Weeks went by with nothing.  So despite my disappointment on Saturday, I mentioned it on my way out of the office.   I was told I had to speak with someone on Monday.  I spoke with someone yesterday, and I have been assured that the situation will be rectified.     

But this isn’t how it should be.  This shouldn’t be what patients come to expect as normal.  Every visit shouldn’t become a fight.  Every appointment shouldn’t be approached with trepidation because of how much it might cost or how difficult it will be to make sure that the right amount gets billed to the right insurance. 

I shouldn’t avoid obtaining necessary healthcare because I’m worried about how a doctor will react to me.  Or if they won’t be understanding or compassionate toward my illnesses. 

I’m sick, but I did nothing wrong. 

Doctors spend years in medical school, studying and learning.  But clearly there are still things that aren’t being taught well.  Clearly the non-medical aspects of being a doctor don’t rub off on everyone. 

Next time, I will be strong.  I will fight back.  I will throw down.  And I will stand up for myself.  Because I didn’t ask to be sick, and I’m doing the best I can to live with it, but the fact that I’m sick, on its own, does not give anyone, including a doctor, a right to mistreat and disrespect me. 

It bothers me that despite the fact that I don’t have any years of medical school behind me, my eight plus years of experience as a patient still isn’t seen as being worthy of praise or esteem.  For some doctors, it doesn’t even grant me a seat at the table or even a voice in the exam room.  

I will continue to be outspoken when I find the courage to use my voice.  But doctors cannot remain silent.  They are 50% of the doctor-patient equation.  They must stand up for themselves and they must stand up for their patients.  Getting consumed in the greed and the bureaucracy diminishes us all.  It makes doctors focus more on the bottom line and less on healing and minimizing suffering.  And it cheapens the patient experience.  It makes us bitterer, angrier, and less compassionate, both for our doctors and for ourselves.