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HCPs and the DOC.

My type 1 diabetes is managed on a day-to-day basis by me.  I do my blood sugar checks, I make insulin decisions that correlate with the food I’m eating or the exercise I’m doing.  I have decided to make an insulin pump, a glucose meter, and a continuous glucose monitor part of my diabetes technology arsenal.

My endocrinologist helps manage my diabetes from a distance, but her input is important in the decision-making process I fumble through every day.  Her recommendations, education, and advice color my choices in debating things like Symlin, having children, clinical trials, etc.  She prescribes the drugs and devices I need/want/should have.  My endocrinologist went to medical school and, in any given week, sees dozens of patients living with diabetes (all types).  She’s (sorry for going full Rhode Island’er on you here) wicked smart.  And she helps put her more global perspective on diabetes in play with my myopic view of this disease, giving me a slate of smart options to think about.

Last night’s #dsma chat was a tough one because it seemed to inadvertently set up healthcare professionals as the “bad guys” and people with diabetes as the “wicked smart” ones.

Whoa, what?  I’d like to assume (and I think correctly so) that the question was more poorly phrased than poorly intentioned.  The discussion should have been about gaps between HCP and PWD communication and about building better HCP/patient relationships, not pitting one side against the other.  But, like it or not, it did open up a heated discussion with Tweets and emails and texts flying.  Paraphrased examples:

“They doesn’t listen to me.” 
“They dismiss the things that I say.”
” They judge me.”
“They don’t care about me.”
“I know more about diabetes than they do.”

Funny thing is, I’ve heard doctors and patients ALIKE say these same phrases.

I have had my share of excellent doctors in my life.  Compassionate, smart, reasonable healthcare professionals who have helped me maintain good health.  Ones who have encouraged my patient empowerment and who have celebrated with me the health I’ve achieved and have maintained.  I’ve also had my share of crummy doctors – apathetic, arrogant, uneducated healthcare professionals who didn’t do anything to move the needle on my well-being (except to potentially push it back).  It’s frustrating as fuck to be under the care of a medical professional who doesn’t seem to care, or who make you question the depth of their diabetes knowledge.

And I’ve been an excellent patient a lot of the time.  I’ve been on time for my appointments and armed with the data my doctor needs to help me make decisions.  I’ve had lists of questions and expectations, and my current medication list handy, and my goals outlined.  I’ve also been a crummy patient plenty of times, one who fuddles through the creation a logbook in the waiting room, with a chip on my shoulder already about the A1C result I know won’t be in-range, frustrated by the fact that my insurance company only covers therapies I don’t like, hating on diabetes and the fact that it makes me sit in more doctor’s office’s than I’d like, and arrogantly viewing my perspectives and needs on diabetes as the only one that’s “right” in that moment.

People are people, doctors and patients alike.  And, like all people, there are good days and bad days and good people and bad people and all the in-between people and moments not carefully structured in this sentence but you know what I mean.

The doctor/patient relationship is a delicate one, and isn’t easily housed by 140 characters, or within the confines of one disease state.  What seems to be missing, from my admittedly oscillating perspective, is respect for all parties on all sides.  I need to be more respectful of my doctor’s time, education, and opinion, and they need to be respectful of the exact same things for me.  One doctor doesn’t make or break my perspectives on how healthcare professionals conduct themselves, just as one patient doesn’t speak for us all.  I am the expert on MY own diabetes care, but there is no way I can claim to be the expert (or even remotely knowledgeable) on all things diabetes.  I have made many mistakes along the way, both in how I manage my diabetes and how I interact with my medical team, but I have to allow myself the chance to learn from those mistakes.  Same goes for my doctor.

This is life with diabetes.  My healthcare team AND I work together on my health.  There’s both an “I” and a “team” in “my diabetes,” and that’s the way I like it.

16 Comments Post a comment
  1. Jen #

    Love this, Kerri.

    I’m a part of a really cool initiative happening in Toronto right now called T1 Think Tank – it focuses on bringing the patient voice/experience and the health care team voice/experience together to create something that works for everyone. It’s been really exciting to be involved! Might be worth checking out? (PS See you in Melbourne?!)

    11/21/13; 11:25 am
  2. Well said, Kerri.

    11/21/13; 11:54 am
  3. Very good perspective. With all the frustrations we deal with, our healthcare team shouldn’t be one of them in my opinion.

    11/21/13; 1:20 pm
  4. I know, there were some tense moments in that chat. I try to stay positive as much as possible in a public forum. If I have anything negative to say, I try to make sure I say it to the person it’s directed to first. Privately. Then I might say something about it.

    So let me say that I think your post is absolutely spot on. My doctor knows diabetes, I know me. Both perspectives are important. Thanks for tackling a sensitive subject.

    11/21/13; 2:01 pm
  5. I actually wrote a story for Diabetic Living on this very topic that will be out in the spring. I think there are way more productive things we can do to help our relationships with our HCPs rather than just sit around complaining about how stupid they are. I hope to contribute positively to the conversation.

    11/21/13; 2:05 pm
  6. Yes. Everything you just said.

    Yes.

    11/21/13; 2:19 pm
  7. I’ve talked to other local d-friends who hate the endo office that I go to. It’s been a bumpy ride for many years now, but I personally love my doctor, and I’ve stuck by him even through years of crappy office staff and waiting times. Today, he made me cry. Tears of hope and compassion. He gets me, and he has become one of my biggest cheerleaders, not only in diabetes but in life in general. I have hope that I can accomplish weight loss, and still manage my diabetes – with his support. I wish everyone had this kind of relationship!

    11/21/13; 2:21 pm
  8. Janette #

    Jen……I live in Toronto (hopefully you are talking Toronto, Ont., Canada)…where can I get info. on the T1 Think Tank you mentioned above.

    11/21/13; 4:06 pm
    • Michelle S. #

      Janette, I am involved with the T1 THINK TANK too. You can check it out here: http://t1thinktank.com/ Watch the video to see what it is all about. The intent is to bring together patients and HCP’s (some of us are both T1′s and HCP’s) to bring more of the patient voice into diabetes care. It will start with Toronto and then spread, so people from other cities who are interested can sign up for an event on the website too!

      11/21/13; 8:21 pm
  9. There is an I hate Dr. Endo facebook page for a pediatric endocrinologist here. From what I hear the parents of the mothers of the children he sees he deserves it. But this is a big city with lots of doctors. If you can’t work with your doctor you need a new doctor and (s)he probably feels like they need a different patient. The best lesson having cancer taught me was that these people are going to be in my life for a very long time. We need to respect each other. You have done an excellent job defining the roles and how we need to interact with our doctors.

    11/21/13; 4:44 pm
  10. Whitney #

    This is SO important. Not just with diabeties, but with any doctors you see. It’s so important to find specialists and general pactioners that you get along with and respect. If you can’t trust your doctor it’s no good for you as a paient and it can’t make it easy for them to treat or diagnose you either. It is like dating with needles even if you don’t have diabeties.

    11/21/13; 9:43 pm
  11. Kerri, thanks for an excellent post. In the past 58 years of life with type 1 I’ve met many MD’s and CDE’s. Most have been compassionate people who dedicated their time and energy to working with me in a partnership of mutual respect. For the few who chose not to acknowledge my role, I moved on.

    11/21/13; 10:11 pm
  12. ria #

    like dating, only with needles……
    a love/hate relationship ?
    hip hip horray for my Doc, and ….DOC

    11/22/13; 10:54 am
  13. laura #

    Thank you for posting this! I needed to read something like this today. I left my hospital appointment this afternoon in tears after a dreadful consultation. My hba1c is 5.8% and i have worked my socks off to achieve that. I am also three months pregnant which is a real incentive to keep on pushing and trying to do the best I can. I left the appointment feeling judged, not listened to and worst of all a bad person. I don’t need much but perhaps some compassion or empathy when working as a diabetic speciaist nurse would be greatly appreciated. This illness is tough, really tough at times and perhaps some acknowledgement of this within the context of my apoointment (which I believe is the appropriate place and context for such discussions) would be so helpful. I never see the same person twice (NHS in the UK) so i understand that the lack of continuity can be challenging for both parties. Anyway, I just wanted to say thanks for posting that. It was not only very well written but for me, very well timed and I drew some real support from your words.

    11/26/13; 12:14 pm

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