How To Advocate For Yourself With Doctors


When I read the following Facebook post from my friend Aviva Romm, MD, it struck me that if a Yale-trained physician who works with Mark Hyman, MD has this much trouble getting the kind of medical care we all deserve, we have a bigger problem than I even realized. Fair or not, usually doctors get easier access to health care than those outside of our field. As a professional courtesy, we tend to wait less, get squeezed in emergently, have easier access to communication with our physicians, and even pay less money sometimes. (We don’t necessarily get better health care because doctors tend to overfuss over other doctors, but that’s a whole other story. Don’t even get me started on my own childbirth experience!)

But I digress. Reading Aviva’s story inspired me to share it with you, not only because I hope it lights a fire under you to join the revolution to heal health care, but because I want you to realize that if you’ve ever felt disempowered in the doctor’s office, you’re not alone. Even doctors feel this way sometimes.

Take it away, Aviva!

This week I had to be a patient. I was having some strange abdominal symptoms and finally decided it was time to have a check up. It took me 2 weeks to get in with a doctor and I finally had to have a friend get me in because the more open minded docs in the area aren’t taking new patients. I then had an appointment with a nurse practitioner who barely ever looked at me (I finally made her laugh and she eventually connected.) Instead, her eyes were fixed on the electronic medical record the whole time. I was seated in a very low chair, and she was on a stool that was at its highest position, so I felt like a child physically – not really a power position! The exam was incomplete (my abdomen was never palpated!) and done improperly and all that was done was to turf me to the next level of care – an ultrasound. I had to ask for the lab tests that were appropriate to create a meaningful differential diagnosis (thyroid, anemia, etc).
It was unclear when I’d be able to get in for the ultrasound, but I was able to pull the “I’m a doctor” card, and they got me in within hours. After a very painful transvaginal ultrasound and a not painful abdominal ultrasound with the tech, who was very nice and seemed thorough, making some slightly concerned faces and looking at some areas for longer than usual (I’m a doc, so I know how long things should generally take to examine), I was told it might be 48 hours before I heard results. 48 hours? The radiology suite at the local community hospital was empty and there’s a radiologist in there!
I pulled the doctor card again, and I got the read – a 2.8 cm hemorrhagic cyst on my right ovary (that’s why ovulation hurt so much this past month!) Nothing to worry about. Finally, 2 days later at 5 pm, the nurse practitioner calls me back and tells me that I have a complex cyst, it’s “probably” not ovarian cancer, but I should get it rechecked in 8 weeks. I ask her about my blood work, which was totally normal, and we hang up. So I check in with the doctor on call to get a better read. He says there’s a 90% chance the cyst is “nothing,” but we won’t know for sure what it is “unless we take it out!” I’m thinking you don’t take out hemorrhagic cysts of that size, so what’s the deal? What am I missing here?
I pull the doctor card for the third time (hey, with $250K of medical school debt I figure I may as well make use of it for myself!), and I call the radiologist at the local hospital where the imaging was done (“This is Dr. Aviva Romm, may I please speak to the radiologist on call? I’d like to discuss a mutual case.”) He’s super receptive, he’s the one who read the images in the first place, and he gives me the full low down. It’s clear as day that we shouldn’t worry about this cyst. He wouldn’t even repeat the ultrasound and no way should it be removed. I go over the whole thing, including the horrible sense of vulnerability I felt, with my best sister friend from medical school. She’s a radiology resident at Duke and knows her stuff, and she reassures me. But more importantly, she knows me and is able to just listen and be so loving. Isn’t THAT what we really need when we feel vulnerable?
I am really grateful that I’m healthy, and I’m relieved! But here’s the thing: if I weren’t a doc, I would not have been able to get all this special extra info so quickly, and I’d be spending my weekend in worry. And if I weren’t okay, I’d be feeling really terrified to put my health and my life into the hands of the medical profession for the most part (yes, there are some gems of nurse practitioners and docs out there).
Since this happened, I have spent days mulling over what it’s like for patients in this country – the lack of power, the inconsideration over the fact that people have families and worry about things that might be seriously wrong with them, making patients wait days for answers when we’ve got them right in front of us. It’s all so unfair- the ineptitude of some providers (that patients don’t even know about because they don’t know what to expect!), the lack of basic eye contact and respect. “Hey, this is my body and that is MY information you’ve gathered. Okay, maybe you need to think about it for a couple of days and get back to me but uh, am I going to be okay?”
So WOW – on behalf of the medical profession – my deepest and sincerest apologies to all of you who have ever been mistreated, made to feel small or insecure or vulnerable, like you are annoying or demanding for asking questions. If you’ve had fear communicated to you by someone who was simply covering his ass in self-protection, or if you’ve had to wait months to get into a doctor’s office for an appointment, I’m sorry. This is NOT HEALTH nor is it CARE, and I promise to remain committed to providing information that helps you to feel empowered and knowledgeable about your health, to take ownership of it, and to keep creating better options in and out of the system.

Be The Change

I hope this story inspires some of you the way the experience inspired Aviva. We can’t just sit back helplessly while our health care system self-destructs. Whether you’re an empowered patient or a conscious health care provider, it’s our responsibility to take back the power of our health care into our own hands, mobilize the forces of light, and do what we can. As Margaret Mead says, “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.”

Join the revolution here.


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