Every time I meet a new provider, and sometimes throughout my course of care with them, I feel like I have to prove myself. I have to prove that I know a lot about my diagnoses. I have to prove that I am actually experiencing the pain or symptom I am there to speak to them about. I have to prove that I know my rights as a patient.
It’s almost as if I were on trial.
I guess it’s a good thing then that I’m a lawyer and trained to defend myself. I know to bring evidence. I know to make that evidence readable and what makes it credible. I know how to make my case to prove myself.
I shouldn’t need it, but I have primers on some of my diagnoses that are highlighted and cited. I have articles, also highlighted, from respected journals. I have my medical records for the past 16 years backed up in several different places so I can pull up any test, any note, any record from any provider. I have written documents explaining things like the simple laws of why I can and have the right to use email to communicate with my providers and why I do.
And if that’s not enough, I essentially refer to every item on my resume and name drop organizations I’ve worked with. I tell them I know what I’m talking about because I’m a lawyer and I’ve spoken at Stanford and I’ve written for IBM and worked in legislative offices and consulted with AHRQ and so on. I don’t put J.D. or Esq. at the end of my name when I sign paperwork, but even if I did that’s not enough to offer me the respect that I might know something about my health, about health policy, and about health law. I have to do more to prove myself. I have to make a case that not only am I worth listening too but that what I’m saying is true and important.
In my life, it has been a pattern that providers don’t believe me. At 15, I broke my elbow and no one believed me until 5 weeks later when it healed incorrectly. At 17, I separated my rotator cuff falling out of a double flip but the orthopedist didn’t believe me that it was pretty bad and hurt a lot. When finally he did the surgery a year later, he came out saying it took twice as long because they didn’t realize it was that bad. When the meniscus in my left knee was torn, a different orthopedist told me that I was just overweight. Turned out that not only was it torn, I ended up in the ER because it caught in the joint and my leg wouldn’t straightened. When I started getting daily headaches, the first 2 neurologists told me that it was my diabetes or that I had sleep apnea. When a doctor finally took me seriously and ordered an MRI, the discs in my cervical spine turned out to be herniated which I eventually had to have surgery on. I can’t list the number of times I’ve reported a side effect of a drug that a doctor didn’t believe and had to bring in research to prove it. I also can’t list the number of times I’ve had to explain best practices to a doctor – like that it’s better for quality of life and effectiveness for me to take my synthroid and zyrtec at night versus the morning or why levemir does not have the same activation rate as lantus. I could go on.
And that’s just physical issues. When it comes to mental health, I’ve been the one educating doctors (primary care doctors, specialists, hospitalists), certified diabetes educators, therapists, etc about diabulimia. I also have the task of explaining borderline personality disorder (the only way to decrease the stigma is not to say I don’t have it but to admit that I do and face the judgment, hoping to change the rhetoric through education).
But then I also have to explain policy and law. I have to explain why it’s better/more efficient for me to have better care coordination and why that means I use email versus a portal. I have to explain why asking to use email is HIPAA compliant and that I understand why they use (meaningful use mostly) and prefer the portal (they all think it’s the most secure) but why the technology of the portal from security to UI/UX is failing my care needs.
Providers don’t like this type of assertiveness. And the fact that I’m a woman doesn’t make it any better. In society in general, assertive woman are seen as demanding and bossy and difficult. Additionally, many studies have shown time and time again that female patients are taken less seriously and their pain more likely to be dismissed. Thus a female patient with complex physical and mental health issues who is assertive puts me at a huge disadvantage.
Providers’ egos are threatened by this assertiveness, and they become defensive. This then usually leads to reactions such as lashing back (“you don’t know what you’re talking about”), shutting off (ignoring me completely), and/or shutting out (“you can’t be my patient anymore”). Instead of using it to engage in my care, to collaborate they see themselves losing control. Instead of being open to my proof – this new information I bring – and rising to the challenge of my care, they back down or away, when all I was trying to do was to be heard and understood and respected.
How do I help providers get it without having to prove myself? Again, I shouldn’t have to, but I do and I still haven’t found a good way, honestly. I take my primers and articles and records. I offer positive reinforcement by profusely thanking them when they get it, I offer stickers and give 5 star reviews on their feedback questionnaires to prove that they got it. It’s not that I’m shoving all of this in their face with high expectations to know and fix everything all at once. I just want them to hear me and understand me and respect me so I can be seen, heard, and believed.
Is it so hard to think a patient might know something? Why must patients be on trial? And why is the default that we are either guilty of not knowing anything or guilty of being too demanding?
No patient should have to work this hard to prove themselves.