instrument

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,

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32 Comments

  1. pediNP

    It’s all fine and good to advocate for yourself or loved ones. But you want to do so in a collegial manner. Yesterday I saw a child whose mother played the “I’m a dentist” card and demanded testing and treatment that I didn’t feel were warranted for what looked like a viral illness. She wouldn’t let me explain my decisions; she cut me off. I performed the test she was demanding, which was negative; she accused me of lying and demanded treatment anyways. That I refused to do. So she loudly complained about me to the waiting room and front desk.

    Yes, this was extreme, but there is a fine line between patients getting the care they desire and the care they believe they need. Sadly, I’m seeing more patients demanding testing and treatments that aren’t warranted. What happened to trusting the provider?

    Reply
    • Lissa_Rankin

      You’re absolutely right. It’s about being empowered, not entitled. Part of being empowered is interviewing your providers to find the ones you can trust- and then marrying their wisdom with your own intuition, rather than letting your fear bully your providers…

      Reply
    • Mary Mack

      This original post hits so close to home for me, I could go on and on. There is abundant lip service paid to: be a strong advocate for yourself in your own healthcare. I constantly hear it, but it is much easier said than done. I’ve learned to be and many doctors absolutely can’t stand it. The pervasive attitude is shut up and don’t cause more work for me. Don’t ask questions. One top doctor at a top institution said to me during a hospitalization: “behave for us”. Meanwhile, mistakes were being made and I was pointing them out in as congenial a way as possible. In other words, not behaving. That’s often the backdrop of being a strong advocate. And no one will like you. You will get the Elaine Benes label as the difficult patient. (Some absolutely appreciate you). Sometimes the choices are 1.Stay in your place or 2. Live.

      Reply
      • Lissa Rankin

        Dear Mary, You are right. Nobody ever said that being an empowered patients or speaking your truth is easy. Although the system is made up of good people who genuinely care, many of them are traumatized by the system itself and have erected egoic armor and defense systems that can come across as belittling, disempowering, and sometimes even cruel. The path of truth requires spiritual warriors who are willing to call out “The emperor has no clothes!” The emperor doesn’t always like that. but the more empowered patients can speak truth from the heart, instead of from their own defenses, the more you can call out the tender spot in your healers in order to remind them who they are and call forth their most Divine nature.

        Reply
        • Mary Mack

          Thank you Lissa, you are so right about that. Unfortunately, however, most of the time a hospitalized person is very sick and almost always afraid. They are coming from an understandable place of fear and so hitting that tender spot with finesse is difficult-if not impossible-coming from an anxious defensive/fearful place. Most of the time– I have found– it’s the really great nurse that comes through. It’s unfortunate that it’s the patients task to find the human being behind all that egoic armour. It’s a messed up system. Lots of doctors like it just the way it is and some really great ones know it’s a mess and absolutely wish it were different.

          Reply
          • Lissa Rankin

            I hear you Mary. I don’t know a single doctor or nurse (or patient for that matter) who likes things the way they are. As health care providers and patients, we are not helpless victims at the mercy of the system. We ARE the system and it’s our responsibility to participate and heal it- one healer/patient relationship at a time. I know that’s not easy, but no great thing has ever been easy. Just look at Gandhi!

          • Mary Mack

            Patients need to be heard–I am not a victim, but have been vulnerable during hospitalizations many times. And I still speak up. Often, I am not popular– some doctors can’t stand me and others appreciate me for it. Some doctors ABSOLUTELY would rather patients remained disempowered. Hopefully, they will soon retire. As well, with medical literature readily available online for years, there are many very knowledgable patients out there (a whole other topic). The playing field will level out; it needs to- it will take a while. The hubris has to go. The payer/money system further creates a wedge and is certainly part of the damaged relationship and problems with the system. Thank you Lissa.

          • Mary Mack

            httpss://myheartsisters.org/2012/12/09/labelled-a-difficult-patient/#comment-62088

          • Mary Mack

            The poster is a different Mary, not me. But it is SO important and the last response quoting “being likable and lucid while being very ill”is exactly what I meant earlier. It can’t be overstated–the difficulty and the unfairness that the onus is on the patient to break through the egoic armor. No, the onus is on the doctor to get in touch with that. Thank you, I will stop posting now (sorry but it’s important)

  2. sarita coren

    This is such a heartfelt post. Thank you for that. My husband recently had surgery on his knee. Doctors call fixing a torn ACL “routine” surgery, but let me tell you, there’s nothing “routine” or minor about any procedure. Once you go to a hospital or are sitting before a doctor, you are so completely and utterly vulnerable.

    My husband’s doctor has a great reputation, which is why we chose him. I have but one complaint, and it’s a doozy. Weeks before the surgery, he gave my husband the option to choose a cadaver or his own muscle to repair the injury. He highly recommended going with a cadaver after the age of 30+ for reasons that were not too clear to us other than it would hurt a lot more, even though it had less risk of rejection, and “unless you’re playing for the NBA, it’s not worth it.”

    My husband chose to go with his own even though he’s 38. On the day of the surgery, the doctor showed up and asked why my husband didn’t call him back the day before because he wanted to convince him to go with the cadaver, which he still thought was the best way to go.

    So, picture this. We are sitting in a small cubicle at the hospital completely vulnerable. My spouse had already donned the not-too-attractive gown that leaves way more exposed than feels comfortable (think cold air in places that he’s not used to). He’s already queasy on account of pre-op fasting, the IV needle dripping into his arm, and repeating his medical procedure over to attending nurses – several times.

    Step in his doctor whom we have put our faith in and he tells us that he doesn’t think that he made the right decision to go with his own.

    Dear doctors, that is not the time to say that to a patient. EVER. If you are leaving the ultimate decision with a patient, then EMPOWER the patient with their choice. Give them the confidence that they made the right decision FOR THEMSELVES.

    We WANT to put our faith in our doctors because, let’s face it, we need them! But please don’t undermine us patients while we are doing so. Thanks for letting me share. XO

    Reply
    • Lissa_Rankin

      Amen! Tell it!

      Reply
  3. Pat Petersen

    Boy- does the comment “speaking to the back of the head” resonate with me!! When I see my GP, which is rarely, I book back-to-back appointments with him- one appointment for data entry and the other to speak to ME. I will NOT speak to the back of his head!

    Reply
  4. Jennifer

    I recently had a disempowered experience at the doctors… I’ve been having issues with an irregular period but I’ve been avoiding the doctors because I KNOW they are going to want to pump me with hormones. I got there and she asked me how do I regulate my hormones and cycle so I answered ‘umm, reduce my stress and make my life better’ and she answered ‘yeah, like that’s going to happen, we use hormone therapy’. All I was thinking is yeah NO, that’s not going to happen. I just tried to keep reminding myself that I was just there to make sure there was no real medical problem and that I had the power to decline hormone therapy. She also pressured me to get the HPV shot. I’m not a huge fan of vaccines.

    Reply
  5. Mart Ramirez

    Amen! Wow. LOVE this! Kudos to Aviva for sharing this and for you for sharing it with us. I’ve fallen in the same shoes and if it wasn’t for my push in answers and help, I would not be getting the help I need, sad to say. I think the worse part is not dealing w illness but not having health care professionals pushing to help you. It’s hard to move on and try to restore your health when you have no answers and when you are trying to find all the answers alone.

    Vulnerable is the PERFECT descriptive word. Helpless comes in second. It doesn’t have to be like that. Patients can get through illness with the help of their doctors if they get answers and try to help their patients as soon as possible. But when the patient is the only one trying to ‘help’ themselves, it’s so much harder to be on that road to recovery.

    You are AMAZING, Lissa. I love all that you do. Keep up the great work!
    XO

    Reply
    • Mart Ramirez

      You know what’s funny too? As I was going through that journey, I kept thinking man, I wish I was a doctor, maybe then I’d get help and answers faster.

      Reply
  6. Kat

    Good piece, however i don’t think it gives any advice on “how to advocate for yourself.” It simply outlines the problems with the current medical system and how even a doc can be frustrated with it.

    Reply
  7. MY LIFE ruined by Levaquin

    As a victim of Fluoroquinolone Toxicity, my treatment by the medical world is beyond belief terrible. I was damaged severely by the antibiotic Levaquin. My struggle to be heard is the same that thousands FQ Victims have experienced. I am asking you, Dr. Aviva, when will this ever change? Why are doctors not educated on this life changing damage?

    Reply
    • Kat

      Oh, so many of us from Cipro, Levaquin, and Avelox. Nasty, nasty things. We need to do all that we can so more lives aren’t ruined. The docs give out FQs like candy.

      Reply
      • MY LIFE ruined by Levaquin

        Fluoroquinolone Toxicity will not stop until the doctors are educated by drug reps….

        Reply
  8. Melanie

    Lisa, I don’t know if you can help me but Im at my wits end!! some months ago I went to maxillio facial dept with what I thought was bad TMJ pain. They said they would make me a bite splint and shot me with some local just to give me a ‘break from the pain’ Well the next day my face swelled from the injection and was bruised with a hematomia for 4 weeks. Some weeks later, I had more swelling and more jaw pain, thinking it was a infected tooth I went to a dentist who couldn’t find anything but did think I had blocked sinus. I went to my gp who refered me to ENT and pumped me with antibiotics. Meanwhile the searing pain was reducing me to tears 24/7 and making me wonder what to do with myself! pain is horrific to say the least and ENT confirmed it was NOT a sinus infection! this took 12wks and 12wsk of antibiotics I didn’t need! my gp wouldn’t help me anymore and said go back to max fac, I did, they said to some jaw stretches! meanwhile we had to change our shower head as I cant take the pain of it, even swallowing or breathing through my nose hurts! I have horrific facial spasms that radiate from my face down my nose and to my throat and sometimes down my whole body! lots of cramping too and muscle jerking, Im on maganisum and bloods are normal. ! I switched GPs and she is thinking along the lines for trigeminal neuralgia, and refered me to neurologist but of course im stuck WAITING on yet another list for an appointment the pain is constant and sharp, priky and achy all at once. I hate the painkillers they do not help and make me feel sick. I was offered antidepressents whilst I wait?!? why?! Im not depressed Im in pain! I was perfectly happy until all this, I have a happy marriage with a man I adore and the big family I always dreamed of, sure I have day to day normal stresses of life and I lost my dad last year but NOTHING that could cause this horrific pain. As of 4mths I lost my quality of life, I just no longer know what to do I cant ‘forget the pain’ and busy myself, because its constant and electric and horrendous! I just want my happy life back that I had, until all this pain I was so happy. Ive tried acupuncture, chiropractor, herbs, and nothing works! Now I feel like my face is contracting all the time with pain, I even had botox but didn’t help. Im at my wits end, I have your book but Im struggling to put it into practise due to the pain, please help me. Thanks

    Reply
  9. Lisa

    Thank you Lissa for sharing Aviva’s experience, I am a big fan of your work. You are so right pts are in control of their health; not the providers. For a long time, I always believed it to be the providers who were in control. Last December, I found out what it was like to be a pt in a hospital. I suffered a major abd bleed and found myself in the ER of a prestigious hospital. Having worked in this system for over 15 years, I mistakingly thought I would be well taken care of. Of course I was wrong. For whatever reason, the nurses left me alone aside from the initial assessment. I had to advocate for myself the entire time. After all the multiple blood drawings from the residents + US, they realized I had bled into my abdomen. From then on, I had to request an IV, I had to request to be connected to the blood pressure monitor so I could at least see my vital signs. I could code and no one would even know it. I also was supposed to receive a a chest xray and diff positional bp readings, but none of that happened either. I was in so much pain (pain from the abd bleed + pain after an earlier procedure) no one assessed my pain. I only received saline after I requested it (I was npo)…I could go on and on. At the end of it all, when the attending came at 7 am, it went uphill from there. He saw the bad shape i was in and immediately scolded the dr who left me there. When I left the hospital a few days later, I told my husband how glad I was to be a nurse. How else would I have been able to request for the care that should already have been provided. I asked my husband, what would other ppl who are not in health care do? what kind of care would they receive? I have always taught my pts to advocate for themselves and to teach them providers are here to guide us, pts have to give their informed consent and decision make themselves.

    Reply
  10. suzykyoo

    I had a sprained ankle and the doctor spent the entire time on the computer and he forgot to check something he’d said he would check. But I got good enough care, at least his findings and treatment were correct. My PCP is exceptional and I actually worry she may burn out with her level of empathy and attention. But she is very vibrant so she probably has that under control. I am very fortunate to live in an area with an abundance of doctors so if one doesn’t work I can switch to another. I got lucky with this one when she replaced my last one that moved away.

    I do want to mention that this blog, although so titled, doesn’t really mention how to advocate for yourself. Most of us can’t play the doctor card. Any tips are appreciated. One thing I find helps is taking a list with me that way I do not forget to discuss something even if the doctor does.

    Reply
  11. Sasha Brussel

    This is what happens if you’re not a doctor!…..
    After two weeks of going to the doctor in pain, to be sent to emergency, to only be sent home again with no answers. With suspected appendicitis, they left me lying there for 5 hours then told me because it was after 5pm now they couldn’t do any Ultrasounds and to go back and see my doctor the next day. They second time the doc sent me to emergency they Did an ultrasound then sent me home and told me to see my doc for results. It took 4 days to get an appointment. She looks at the X-rays and says..so you’ve had your appendix removed in the passed? When I told her no she looked shocked as the report said they couldn’t find my appendix. They had ruled out appendicitis at ER and sent me home. All this time I was still in pain on and off daily. When the pain hit I couldn’t stand or speak and was doubled in pain. After a third visit to Emergency and another ultrasound and 1 week wait to see my doctor for results I am told I have a large cyst on my ovary. It was boarder line operatable. I was given a referral to see a specialist, but his next available appointment was over 12 weeks away. By this point I had had enough and rang up my doctors receptionist in tears. When my doctor heard about my appointment trouble she rand around and found me another specialist that could see me straight away. The specialist looked at the 10 day old ultrasound and told me I needed to have the cyst removed as it might kill my ovary. He had just had a cancellation that day and now had a surgery spot available in 4 hrs time. I said ..shouldn’t u do another ultrasound to check. He said no, it will still be there as I was still feeling unwell. I told him I hadn’t had a pain ‘attack’ for at least 48 hrs now. But he insisted that nothing would have changed and that I had 30 min to give him n answer.
    Well against my better judgement I let him operate, they cyst was no longer there. He saw evidence of endometriosis while he was in there, so he decided to remove some of the lining of my uterus while he was in there, removing some growths. He told me afterwards that if I wanted to have kids I should do so in the next two yrs now that he cut the growths out they will come back as twice as many. Since having this keyhole surgery I now experience very painful periods like I never had before. I swear he just wanted to fill his surgery spot. I am upset that he took it upon himself to do what he liked when he operated as I would have said no to what he wanted to do.
    I only wish I trusted my own instincts as the cyst had gone by itself and the doctor was too keen to operate. 🙁

    Reply
  12. me

    I have been seeing articles on advocating for yourself with doctors for decades. Asking questions is always one of the suggestions. Almost every doctor I have ever seen is incredibly insulted by this. And don’t even think about asking what their qualifications are. It’s ridiculous. I avoid doctors as much as possible because of it. And I am sure that many many others feel the same.

    Reply
  13. Nina Perry

    Hi Dr. Rankin – I, too, was prescribed Zithromax for a sinus infection a year ago which caused pancreatitis and landed me in hospital for 4 days. I now have to have EUS every six months because of pancreatic cysts. In addition to the physical and emotional toll, this is becoming financially draining, as well. Was your brother successful in obtaining compensation from the manufacturer? I reported the event to the FDA but they could not direct me to, nor have I been able to discover on my own, any cases or lawsuits involving this drug…?

    Reply
  14. Gayle Bourne

    If she thinks her experience with pcos was frustrating, she should try it with no health insurance…a $1800 bill and no offer of treatment at all.

    Reply
    • Sara

      gayle, i was recently diagnosed with pcos. my naturpath has me on herbs and supplements. in addition, i’m getting my uterus externally re-positioned via arvigo massage techniques. you may want to google “arvigo mayan abdominal massage” as well as research herbs to help wtih pcos. good luck!

      Reply
  15. Liz

    I have a doctor who,in the face of my starting anxiety while on the birth control pill, and having abdominal pains etc. to “lose weight” (I could stand to lose a few, but I am by no means obese). When I stared at him in total disbelief – he had the nerve to write it on a prescription pad and write “Must eat less”…The worst part? I can’t find another endocrinologist!

    Reply
  16. Sara

    one of many reasons why i don’t go to western doctors anymore. i only see my naturpath and other alternative health practicioners. so few MDs are worth their salt these days.

    Reply
  17. KimberlyD77

    Thank you for sharing this. I found it comforting to know I am not the only one who feels this way. I just waited months to be seen by an OB/GYN after a stint in the ER for severe pain. Left with no answers, only a script for Cipro for a UTI that I had no symptoms for, except the fact that my white cells were a little high in a urinalysis. Frustrating! I’m finally getting somewhere, but it was frustrating to even get in to be seen by a doctor.

    Reply

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