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How To Advocate For Yourself With Doctors

lissamatt0717 (2)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.

Committed,

Lissa Rankin

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Lissa Rankin, MD is a mind-body medicine physician, founder of the Whole Health Medicine Institute training program for physicians and other health care providers, and the New York Times bestselling author of Mind Over Medicine: Scientific Proof That You Can Heal Yourself.  She is on a grassroots mission to heal health care, while empowering you to heal yourself.  Lissa blogs at LissaRankin.com and also created two online communities - HealHealthCareNow.com and OwningPink.com. She is also the author of two other books, a professional artist, an amateur ski bum, and an avid hiker. Lissa lives in the San Francisco Bay area with her husband and daughter.

  • Courtney

    Wow, I know this article is supposed to be sympathetic but it makes me quite sad. I have personally been in pain for 2.5 years. I’m 30 years old. After losing 40 lbs and having a breast reduction, I became active and was very happy and grateful to be able to do so. A few summers ago thought I simply pulled a muscle in kickboxing class. After a while I went to a chiropractor who told me it was bursitis and to take a few weeks off from the gym. I did that, got some acupuncture and deep tissue massages; no help.

    After an ultrasound, x-ray, MRI and bone scan, my family doctor simply said, “Well, your tests are fine, so you must be fine!”, ignoring my pleas that I couldn’t even sit down to pee without being in pain. So, I changed doctors.

    My new doctor is an MD and naturopath but just like the article, she is difficult to see because she’s in high demand. Although I’m lucky that she listens to me and empathizes, it still takes time to get more tests done. My orthopedic surgeon gave me 4 cortisone shots (YES, I’M 30!) and sent me for shockwave therapy and I was in more pain than ever.

    Last week I had an MRI/arthrogram with dye and the surgeon said he thought he saw some degenerative tissue even on the Xray as the dye was being injected. I won’t find out my results until Monday but yes, I am very scared. I have been told that it’s rare for someone my age to get help with hip problems because doctors only want to do surgery if it’s completely debilitating. I’m going to say it…. IT’S NOT FAIR! I’m young, otherwise healthy, but my poor boyfriend who I now own a house with has never seen me free of pain. I’d like to get back to exercising since I worked so hard to gain a healthy lifestyle those few years back.

    I’m trying to stay hopeful and will continue to advocate for myself, but again, it makes me sad.

    Thank you for sharing your similar experience and reminding me that we’re in this together.

    Courtney

    • Courtney

      Tendonitis and arthritis and bursitis, oh my! Well, looks like I have to wait for the sports clinic in London, ON to call me to help me with that news :/

  • Angela

    It would be good if the the authors would include advice/actions to take. Clearly we can’t all play the doctor card – so what are some constructive steps we can take as patients and caregivers?

  • http://msannomalley.com/ Kathy Kramer

    I’ve had a similar experience a little over a year ago after my mammogram. I’m not a doctor and I got a phone call telling me that there was “something suspicious” on my mammogram and that I had to go in for a second one and an ultrasound the following week (at least they made the appointment for me). I already have anxiety, but that entire week was a nightmare. I kept telling myself to not imagine the worse, but then the anxiety demon was sitting on my shoulder and telling me I shouldn’t just dismiss this as nothing, either. Yes, they could have handled it better and been a little more sensitive and open with me. Fear of the unknown is not a good thing to be invoking in people who have anxiety disorders.