Monday, October 3, 2011

Doctor, Please Listen To Me!

Although I talk a lot on this blog about my experiences with an autoimmune disorder called Sjogren's Syndrome, I have dealt with and currently still deal with a multitude of other medical diagnoses. It would appear that when it came to the luck of the draw in the God designing Christine department, I got the short end of the stick. I was not a particularly sickly child, but once I entered my early twenties, it seemed like every few years a new medical problem reared its ugly head. I am not talking about common stuff either. Oh no, I got the wacky and unusual stuff....Hodgkin's Disease (which is a lymphoma), AV Nodal Reentry Tachycardia (a defect in my heart's conduction which required surgery), Factor V Leiden (a genetic blood clotting disorder), and of course the Sjogren's Syndrome. Throw in some more common diagnoses like Hypothyroidism, Polycystic Ovarian Syndrome, etc. and you have a nice array of specialists that I have to deal with on a regular basis.

There is a point to mentioning all this though. Because of this ridiculous amount of exposure to the health care system as a patient and most significantly because of the challenges I have faced in dealing with doctors regarding the Sjogren's, I have a very (and I mean VERY) low tolerance now for inadequate and impersonal medical care. As a nurse, I have always been a strong advocate for my patients; at times, even getting myself into a little hot water because I challenged my patient's doctors when I felt that they were not being attentive or appropriate in their care of my patients. However as a patient, I was not always good at this. I got intimidated easily by my own doctors and always trusted that they knew what was best for me.

Over the past few years this has changed dramatically because, as I mentioned earlier, I struggled so desperately to get the Sjogren's diagnosis. Heck, I struggled to even get someone to believe there was something wrong with me. And in the end, I listened to my own inner voice. I was relentless in my quest and I finally got an answer.

About a month ago, I woke up with severe abdominal pain that had started a few weeks previous to that day but I had chalked it up to problems with my menstrual cycle. On this day though, I felt that something was really wrong. I called my gynecologist who despite his somewhat impersonal manner, had never done wrong by me. By the time I saw him, I was doubled over in pain. After examining me, he decided I needed an ultrasound which could not be done until the next day. He would not give me anything for pain and said that Tylenol or Motrin should help. It did not.

The day after the ultrasound, I called the office as I was still in some of the worst pain of my life (which is saying a lot!) and I was looking for my ultrasound results. I was told by the nurse that there was small cyst on my ovary that would not be causing me this degree of pain and I needed to follow up with my primary doctor. And of course it was a Friday. I told her that I thought it was gynecological related and as I had issues similar to this previously, but just not as severe. Nope, I still got passed off to another doctor. At this point, I have been in severe pain for forty-eight hours and wished I was dead. My primary doctor was not in the office that day and I decided to go to the emergency room.

The end result of this trip to the emergency room was that I was dehydrated and a CT Scan showed that not only did I have a cyst on one ovary, but I also had a ruptured one on the other ovary therefore validating the high amount of pain I was in. I was told that it would take at least a few days until the pain would subside and they gave me pain medication to get me through the pain and told me to follow-up with my doctor in three days.

I never did go back to my gynecologist. I followed up instead with my primary care who I felt had enough knowledge to see me through the rest of this crisis. See because the problem was, I no longer trusted my gynecologist for many reasons. He knew me well enough to know that I would never be doubled over in pain unless something was really wrong. He did not adequately address my pain issues. He left me like that for over two days and then when I sought his help again, he dumped me on someone else when it was a gynecological problem all along.

I can't let something like this go. There have been a few rare instances in the past few years where I have disagreed with the way one of my doctors has handled something and after having a discussion about it, it was resolved. But when I looked back to all my interactions with my gynecologist, I realized he sucked as a doctor. My visits were always rushed. I always felt like I was bothering him when I had questions about my treatment. He never seemed to want to address the fact that I have a mother with a history of both ovarian and breast cancer; therefore putting me in a high risk category. He didn't take  time to do any teaching with me. He knew very little about how significantly my other medical diagnoses were affecting my life. He just didn't seem to care.

I don't need each of my doctors to hold my hand and be my friend. But I DO need them to treat me as a person; a person who has been through a hell of a lot medically. I deserve to be informed. I deserve for them to be accountable. I am very well aware of how difficult it is for doctors to practice with all the insurance regulations and productivity requirements. But you know what? There are doctors out there who DO listen to their patients. I know because some of them are my doctors. Never in a million years would my endocrinologist let me leave her office in the kind of pain I was in that day without doing something further.

So what am I to do? What are we to do as health care consumers? We need to stand up and make ourselves heard. We need to tell those that hold our very lives in their hands that we deserve the very best that healthcare has to offer. How do we do this? We screen our doctors before we become their patients. We go to our appointments organized with a medication list and a list of our questions and concerns. We take control of our own health by learning about our various conditions and then committing ourselves to truly getting better, even if it means changing bad lifelong habits. We listen to our instincts when we feel something is wrong with our bodies. We don't let doctors rush us through office appointments or procedures. When we feel that we are not getting what we need from our providers, we look elsewhere. And we keep looking until we find what we need and what we deserve.

The outcome of my little doctor fiasco was that I immediately started looking for a new doctor. I know there is a stigma attached to patients who "doctor shop" and you know what? I don't care. You shouldn't either. It is your body, your life. I am not saying that if issues arise, but yet you trust/like your doctor, that you shouldn't try to work it out. You should. But don't let things go. I have been wrong a few times thinking I knew more than my doctor but a good doctor will respect that. It took me changing doctors twice to finally get an accurate cancer diagnosis with the Hodgkin's disease and five rheumatologists to not only get the Sjogren's diagnosis, but also to treat it properly. In both instances I am glad that I did not just sit there and trust that the doctor knew best.

I saw my new provider for the first time today for a procedure. She spent quality time with me trying to make sure she had a good history. She asked about my Sjogren's, how I got diagnosed, and how it has affected my life. She did some teaching with me about not only the procedure but about the possible implications of the results. She was patient. She validated my very appropriate anxiety. She treated me like a person and not just one of her many afternoon appointments.

She knew what she was doing.

She cared.

It was exactly what I was looking for.

Photos :Courtesy of Google Images


  1. Amen, & so glad you have someone who listens. I've recently had to talk to someone else about getting a new doctor, as she wasn't happy & the doc wanted her to some ridiculous things. I'd add that when you are ready to shop, you should ask for referrals from friends first. You may not like them as much as they do, but you are less likely to get the kind of doc that you had.

  2. Very good tip. I actually did that when I knew I was going to be needing a new gynecologist. Two or three different people recommended this practice.

  3. Unfortunately, there are just so many stories out there like this. Prior to becoming sick, I would have tolerated much more than I do now. One of the difficulties I face is that I choose to have all my doctors in one location - at the University of Minnesota. The pros - all my records are in one place, including hospitalizations. The cons - not so easy to shop around. It is difficult to change from one specialty doctor to another when they share the same space. But it IS possible. And I have found that taking care of myself is always the priority.
    Great article Christine!! Thank you!!

  4. Oh my goodness I could have written this myself if I was so inclined and had better writing skills, you have written what so many of us with chronic diseases and pain feel all the time. Thank you Christine for validating us all!!

  5. Theresa ~ That happened to me when I switched pulmonologists a few years ago. They both worked out of the same small community hospital. I saw the old one as I was walking through the hospital hallway and I turned and walked very quickly the other way. I didn't even want to deal with him!

    Anonymous ~ Thank you for reading! I bet your writing skills are better than you think! We all have a story to be shared with the world!

  6. Christine, Thank you so much for writing so eloquently what many of us feel and have to go through. I fell and broke my pelvis in April. I, with the influence of my 90 y/o mother, thought it was just a tailbone bruise or break. I could hardly walk. Follow your instincts is so true. A month later, when I was in so much pain I couldn't sit, stand, walk, or lie down without pain, I went to my mother's doctor who ordered an x-ray. I painfully drove another 20+ miles to the ER. He told me he would call me the next day - Friday - with the results. Nothing. Well, maybe hell call over the weekend. Nope, nothing. Surely by Monday. Nope. So, I called his nurse who told me he was out until Thursday! I told her the situation, and she found the x-ray report which showed no breaks. I told her his not getting back to me was next to malpractice as far as I was concerned. She agreed with me and said she'd tell him. When I could no longer tolerate the pain, I went to the ER - finally - which I should've done the day I fell - in another town. I live in rural Nebraska. There I found a doctor who cares. He immediately ordered a CT scan and found two fractures and kept me in the hospital overnight for observation. I love this doctor. He listens, therefore I know he cares. He is very well worth the 40+ miles to see him. He always asks, "Do you have anymore questions for me today?" My mother has an appointment coming up with her doctor, and I don't even want to go with her and step foot in his office!

  7. Barbara ~ Thank you for sharing your experience. It is quite sad how much we have to fight for basic medical care!