Every time you go see a new doctor you are usually given some notices. These most often include a form/list of patient’s rights and responsibilities as well as a HIPPA form regarding patient privacy. Sometimes I wonder if people ever read these things. I skim them, just to make sure they’re standard, but I have already memorized all of them. I know my rights. I know my responsibilities. And I understand what is and is not acceptable under the HIPPA law. I’m good.
I have a lot of medical stuff, it’s this ridiculously long medical resume in a way. Basically, I shouldn’t be here, but I am. It is “statistically impossible” for me to have everything that I do, and yet here I am. (A former neurosurgeon said this before trying to figure out if something else was going on genetically.)
So when I say that I have had hundreds of doctors, I’m not actually exaggerating. I typically have eight to twelve doctors at one time. Now take into account that pediatric doctors don’t stick around once you become of age or the fact that I have moved for college or in adulthood four times and had to get all new doctors, to doctors retiring or moving themselves, and it’s clear as to why that number is so high (I’m 31).
But out of all of the doctors I have had, I have only fired three. Think about it, three out of 100+ is not so bad. The first was my cardiologist – I was thirteen. He came into my post-op appointment without reading anything regarding my surgery. If this was a regular appointment, I would have let it go. But as my official post-op appointment, it was unacceptable. There had been complications in surgery and they could not complete the desired surgery, instead opting for plan B. Plan B meant different expectations, symptoms and post-op complications. Basically, we waited on him in the office for over an hour and when he came in, he had no idea how to conduct the appointment because he didn’t know the most basic of information that is used to frame the entire appointment. I said goodbye – politely of course.
When I was 25, I had been randomly assigned a GI doctor. I ended up being diagnosed with gastroparesis, a stomach emptying disorder that includes severe stomach pain and lots of vomiting. He refused to listen to me and thought I was faking. I had to threaten him with legal terms for him to even order the necessary tests to diagnose me. Then he told me there was nothing he could do, when there are treatments for this disorder. So I got rid of him upon discharge and saw one of his associates instead. (At the time, I referred to him as Dr. Douchebag in my head and that is how I remember him now.)
A third was a primary care physician who could not seem to wrap her head around my medical issues. She was uncomfortable working with someone who was so… complicated, medically. So while I made the call, I think she was happy. She was incredibly nice, just nervous, which compromised her decision-making.
And out of other medical professionals: nurse practitioners, physician assistants and nurses, I have only fired one. Except now, I guess make that two.
Recently, I had to make the same call that I did with the primary care physician. It wasn’t personal, but for the third time I felt like she was acting outside my best interests because she was either uncomfortable working on a case as complex as mine, or refused to see the big picture.
I told the clinic manager of my decision as well as emailed the physician she worked for (not mine, one of his associates) and sent this letter:
I am writing you to let you know that I am requesting that you no longer work with me as a patient, and that you not be allowed to consult on my case without my explicit permission.
I want you to know that my decision is not personal and does not reflect on how I feel about you as an individual, but as a healthcare provider I do not feel that you have my best interests at heart.
I understand that you have only known me for a few months, and I feel I have given you ample opportunities within that timeframe to get to know me as a patient, but also to become familiar with my case. I am both an easy, yet extremely complicated patient. I’m easy because I know the drill. I know my rights and responsibilities and have done the whole doctor/patient/hospital thing for nearly three decades. I’m not difficult or have unrealistic expectations. I don’t ask for prescriptions or for you to have magical answers. I understand and respect boundaries, and despite being profoundly deaf, I listen and make sure I understand someone else’s take on my case.
I am complicated because I have an extensive medical resume. And what’s worse every medical problem seems to negatively impact or come head-to-head with another. What I can do for my heart is dependent on my shunt, often meaning alternative treatment or surgery options, much to my cardio team’s chagrin. My bones get in the way of my kidney issues, though in all fairness my kidneys pretty much get in the way of everything else. My stomach gets in the way of the ideal diet for my blood issues, etc. Everything is connected and nothing gets along. And that is why it is so important for you, the medical professional, to listen to me, the patient.
I know my body. I know when I feel one way, what it means. I can often predict my labs with incredible accuracy just by how I am feeling. With all due respect, I am the expert. I see my healthcare as collaborative, my expertise is my body, and yours is medicine. I can’t have all the answers, but without me you don’t know how to apply medicine to my case. It’s a partnership.
Whether or not, it is because you are to unfamiliar or uncomfortable to make the necessary decisions is one thing. But then you need to pass it along in a timely manner. You should never speak for my doctor without speaking with him. Particularly when I reached out to him specifically, because I already knew how you felt and disagreed with you. This is particularly troublesome since I have followed up on referrals I knew would go nowhere (the ortho for example, I know the issue with my hands has nothing to do with my bone disease) because it was something to cross off, for you, not for me. This is an example of how I “played ball” so to speak because you wanted me to, and again I am one for collaboration.
I understand that the conservative approach is often the best or most comfortable for you. I understand liability is a scary word and you don’t want to find yourself in a scary position. But being conservative to such an extreme is hurting me as a patient. In this latest instance, had you allowed for a partial treatment and for them to take 100cc of blood, it would have been fine. No matter how low my numbers were. Your cries of “anemia” are, and I am sorry, ridiculous at this point. Maybe if I made this a habit for years, but right now the very issue I am being treated with is essentially the opposite of anemia. I do not appreciate someone looking at what is best for one thing and refusing to look at how it negatively affects another thing.
Remember my medical problems are like the most dysfunctional family being put on house arrest inside my body. Most of my care is maintenance, or more accurately a balancing act on a tight tope. I listen and respect medical professionals when they say I am going to go over if I do X. That’s their job, to make sure I don’t do harm to myself by trying to juggle all of these things. But to refuse to walk the rope and find a balance – that’s what my life and case is. You don’t get to choose that and still work with me.
Again I appreciate your tendency towards caution and being on the safe side. But if I only played it safe, I would have been long dead. 2009 and 2010 was nothing but balancing dialysis with plasma exchanges with Cytoxan and steroid levels. This surgery or that, this drug or that – and everything got in the way of something else. I pushed myself much further than a few of my doctors at the time liked, but it paid off. I will always push myself to find the best balance and to be the healthiest I can be. Sometimes it might seem like I’m walking a fine line, but I know where that line is, and I’m not going to cross it. And I’m doing so, so that this condition doesn’t impact something else I have. Once that happens it’s a big game of dominoes and I am the loser.
I understand that your actions or decisions may be in the best interest of most of your patients. But I am not most, and that generalization is a dangerous one to make. Or perhaps you’re just not comfortable as I said before, making these kinds of decisions under these circumstances. In either case, I feel it really is best to cease our healthcare/working relationship until you overcome this. And then you can approach me and with permission, we can try again. But as of now I feel you are more of an obstacle than an advocate. You do not trust me, and therefore I do not trust you. And there is no reason for someone I do not trust to work, or be informed on my case or me as a patient.
I wish you well, and hope this letter does not upset you. As this letter stated, this does not have to be forever though it can be. But as of now, we are just a bad match.
I think that some people would see this as confrontational or bitchy or uncalled for. Maybe most people wouldn’t do it because they’re afraid of hurting someone’s feelings or how they might come across. For me, I see it as pretty basic.
I have one medical issue that may require surgery – a surgery I am hoping to avoid. But the big obstacle is my bone marrow disorder, which makes my blood thick and icky. That’s what the treatment in my letter is supposed to help. So while my labs for my bone marrow disorder did not call for a treatment, the fact that I was symptomatic and have this other thing – does. And getting a treatment would “do no harm”. I had my doctor approve it, but once again her “butting in” cost me my original appointment and threw the entire week off. And this isn’t the first time.
She’s perfectly nice, but she continues to act in the opposite of my best interest to the point where she is becoming a serious problem. I don’t feel bad for my decision and I don’t feel like I need to apologize for it, or feel uncomfortable. If she sees me she can say hi and I’ll greet her back. But she is cut from Team Michael for now, no question about it.
I wish that everyone felt this way (with their own cases, not mine). I know a lot of people who aren’t happy but don’t “want to be that person”. And most medical professionals I know are horrified at the prospect of patients leaving them, as if it never happens. To both I just want to say, “Doctors, nurses and any other medical professional works for you, the patient. If you feel anyone does not have your best interests at heart, you have the right to let them go, and you don’t need to feel bad about that.”
I don’t. I never have. Because one’s health is everything – why would you ever gamble with that?