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Guest Blog: Patient Perspectives.

Bethany Rose is a new diabetes blogger on the block (you can check out her blog at Me with the D) and today she's offered to guest blog here on SUM while BSparl and I are hanging out (and most likely cleaning up spit up).  Thanks for blogging, Bethany, and I hope you guys enjoy her words!

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BethanyLet’s be honest.  Dealing with doctors isn’t always as pleasant as we’d like.  It’s difficult when we really do need them for help with something so pervasive in our lives.
 
Nobody knows our diabetes better than we do – we live with it every single day!  Still, we so often emerge from appointments with doctors feeling scolded, undermined, and/or unheard.  Why?
 
To be fair, there are some really good doctors out there (I should know – I see some of them!) and there are some pretty scary complications associated with poor control over this disease.  Perhaps our doctors are just doing what they think is best to help us avoid these complications.
 
Maybe our doctors just need a little help understanding the full picture of what we need from them.
 
A few months ago I had a unique opportunity to speak with a group of medical students about what it’s like to have diabetes and to deal with doctors in that context.  As part of this discussion I was able to communicate to these doctors-to-be some of the points that I feel medical professionals really need to understand when dealing with people with diabetes.  Following are some of the issues I raised:

1.  Every person with diabetes is unique.  A textbook might be a good starting point, but realistically, nobody has “textbook diabetes”.   We want to be viewed as individual patients with individual problems requiring individual diabetes management techniques.  Clearly there will be similarities between us, and certain generalizations can be made, but just because one strategy works for one person doesn’t necessarily mean it will work well for everyone with diabetes.
 
2. Some of us have spent a lot of time educating ourselves about diabetes.  We don’t want to be lumped into the same category as patients who aren’t interested in understanding this disease or how to manage it.  We know what we’re talking about and we appreciate it when that fact is acknowledged.
 
3.  Diabetes sometimes requires thinking outside of the box.  Since we deal with our disease on a day-to-day, hour-to-hour, minute-to-minute basis, we might have ideas that our doctors may not have considered or seen before, or that don’t initially seem to make sense.  But even when our suggestions seem unusual, we want to be heard and we want our ideas to be given a chance.  They might actually work!
 
4.  Sometimes poor control isn’t an indication of a lack of effort on our part.  Sometimes it just means we haven’t found what works for us yet.  Sometimes we need help finding a solution.
 
5.  People with diabetes deal with a lot of guilt.  (I know Kerri’s touched on this one in the past.) We don’t appreciate feeling blamed for our diabetes, for our diabetes management problems that we work so hard to fix, or for our diabetes complications that we’ve worked so hard to avoid.  Encouragement and motivation are helpful – blame isn’t.      

I don’t know how much of what I said stuck with the students that day, and I don’t know how much will continue to stick with them as they go on to get their degrees - perhaps even specializing in endocrinology.  I’m sure I only touched on the tip of the iceberg in terms of improving the doctor/patient partnership, but hopefully I was able to plant some seeds that will benefit their patients who are living with diabetes in the future!

Comments

Thanks so much for this opportunity, Kerri! I hope you and BSparl are doing well and thoroughly enjoying one another's company! (And hopefully also getting some rest!) Thanks again!

Hi Bethany,
As a CDE and someone who teaches medical students (and patients with diabetes), I really appreciated your guest post. I will be copying it and sending it out to our students.
Thanks!

And thanks Kerri! Hope everything is going well.

This is why I'm applying to medical school to *hopefully* become an endocrinologist (because, unfortunately, most of the doc's I've seen are in the "not so great" category)! It's great that you got to share your experience with this medical students-- can I ask what campus you were at?

This is why I'm also going to medical school to become an endocrinologist. I really want to be able to say "From a PWD to another PWD...."
Great post!

Thank you for communicating a diabetes patient perspective with these particular medical students. It would be great if all future (and current) endocrinologists and CDEs had this opportunity as part of their learning curriculum or continuing ed. Well done!!

Alyssa, I was at the University of Manitoba in Canada.

Thanks Kathy!

Well said!

It's funny you should say textbook diabetes because many people think that such a condition manifests the same way on everybody that has diabetes. Just like in any other health condition, it's different for each individual.

Well said! Nothing like taking your daughter to urgent care for fluids to help battle the ketones only to read the discharge sheet labeling it as uncontrollable d... talk about making you feel like a failure and the guilt involved... I do not believe there is a such thing as "control"... sure we can try to outsmart it and "manage" it but that's about it

Bethany, thank you so much for your post. A lot of the things you touched on when speaking to the students, I can relate to.

Kerri, best wishes to you, Chris, and Bsparl. Get as much rest as you can and enjoy this time with her.

Amen to all of what you said. I had a particularly hard time with points #2 and 3 at the doctor just yesterday. She recommended I make a change that I knew wouldn't work (which I told her, explaining why from the data in front of us, and a suggestion on what I thought might work instead) and she kept using phrases like "Does that make sense?" in a patronizing voice after explaining something very basic....one of my pet peeves. Reading your post today was therapeutic because I know I'm not alone in my frustrations.

Great post. I think the problem extends past the doctor, it is a problem with the whole system. Doctors see 20+ patients a day, and need to take in an unthinkable amount of information each day to make informed decisions. The only ways doctors can do this is to think systematically. When they do this, they don't have enough time to give customized care to each patient.

I blame the insurance industry for the low reimbursemnts. For the doctors to have a profitable business, they now must see way more patients that they did 15 years ago. Obviously, this leads to lower levesl of patient care

Great points, Bethany!

I have a DERMATOLOGIST who lectures me at every appointment that 'if you lose weight it will make your diabetes better'.

At my last appointment he argued with me about the name of one of my meds - said that Glimeperide was not a medication name and wrote something else down instead.

I've finally gotten sick of his attitude toward me and switched doctors. I think he means well, but he knows nearly nothing about my diabetes and weight history, and I've already got a perfectly fabulous endocrinologist as part of my diabetes care team.

My endo doesn't check me for skin cancer, and my derm needn't concern himself with my weight.

Michelle, I had a similar experience. I told her about something I was doing and she said, "That doesn't make sense!" My response: "I didn't say it made sense. I said it worked." ;)

As someone who has been shot down by dozens of doctors over the past 15 months, your post really ignited a fire within me. I have raised your points with doctors numerous times, only to receive, "I hear you, Kate.." as the cookie cutter reply. My 9 year old son has been the recipient of dismissal, doubt and disrespect from doctors..and as a result, it turns out that I, his mother, diagnosed his diabetes-related complication for them. I'm writing a book about this debacle at the moment. It's a expose about the "bad guys"..and a celebration of the "good doctors" who fought for us and never stopped believing in my theory and my son's blatant symptoms. Thank you for your post-it was very helpful for me to read!

Thanks for the post. Docs are a problem for me. I've had T1 for 17 yrs. Although I've had some periods where I've faithfully gone to appointments, I've generally taken a self-management perspective. I just can't get myself to go to the docs. My sugars fluctuate a bit, and I have some highs, but my last A1C was 6.1... they're generally good like that. I know I should go to the doc more often - and I totally admire Kerri (and those others of you who do) for diligence in this regard - but I can't get myself to do it. Anyone else have this problem?

Very interesting post! All of those points resonate with me. Sometimes it feels like the doctors are too busy or distracted. It's always much better to be treated like an individual and feel you are being taken care of. It's very important for me to know I have a doctor who will listen and understand. :)

To follow up on this post, I wrote an article for Diabetes Health on this very topic. I think you all will find it interesting!
It's called "Dear Medical Health Professional."
http://www.diabeteshealth.com/read/2009/11/07/6439/dear-medical-health-professional/

After a couple of weeks of unexplainable highs and very frustrating days, I was excited to see my endo today. Except i got there and she didn't seem nearly as concerned as I was and didn't really respond to "I AM SO FRUSTRATED." It was disappointing. Not that we didn't talk about it. She did call a medtronic rep for me while I was there since we think the sets I have might be bad (they keep bending). And she also started the process for me to get a CGM. Still I wanted her to say "I can see where that would be really frustrating, hang in there."

Great post!

I response to Jesse's comments: "The only ways doctors can do this is to think systematically."

I have had quite a few taking the systematic approach: You diabetics need to take better care of yourselves! Really, thanks for that bit of info doc.

The best doc I had was one what I despised (sp) Had a knock down drag out fight. Until I asked him if he knew what it felt like to wake up and realize that your in your front yard, in your underwear at noon. (Danged low sugars) Did I mention that the police had their weapons out?

He took on a whole new attitude after that.

John

great post...have been a PWD for ten years now. Got diagnosed when I was 18...after almost a decade of frustration and trying to find the right doctor, getting bad advice, sometimes educating my own doctor, I got fed up, and fired up, worked my behind off and got accepted into med school...am now just about to finish my first year. ironically now that I am in med school I have a really great endo...funny how that turned out!

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