Developing a “language of diabetes”

///Developing a “language of diabetes”
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Diabetes Bites Newsletter

ALICIA-unleashedAlicia: UnLeashed! June 2018 monthly article

Developing a “language of diabetes”

Expectations elevation

Expectations, like flight are all about the right altitude and attitude.

unleashed

I am a big advocate for patient empowerment!

I can often be heard reminding patients that their doctors work for them, not the other way around!  If a doctor is shaming, demeaning, rushing through appointments or refusing to even consider the patient’s goals, that is unhealthy.  It is fine to seek a second opinion or find a better working relationship.  Many people with diabetes have been through one endocrinologist after another in a search for the right fit for them. And that is fine! No one would fly with an airline who just took us to a destination we did not want to go! No one would fly with an airline who ignored out need for an airsick bag, or skipped the safety inspections!  And though we might get eye rolls from other passengers when we can’t get our bag into the overhead compartment, we shouldn’t get kicked off a flight because we packed a little too heavy for this flight. It’s all about making it to the agreed upon destination safely.

However we have to go in with the right expectations.  No one in their right mind expects to get on a plane in this day and age and have a drink with the captain, he has a plane to fly! Flight attendants are friendly and helpful, but there are a few of them and hundreds of us, so we will probably have to be patient in our wait for a tiny cup of sprite while they assist a patient with movement limitations to the bathroom. But we have all been on a flight with that person who decided that their coach ticket for a three hour flight makes them royalty. They are demanding, argumentative, rude to staff and others around them, and have a way of making an otherwise unremarkable flight rather miserable.

I always feel bad for those people. They had an opportunity to sit back, read a book, and share in the common discomfort that is air travel with their fellow passengers. For that few hours we all share the common bond of sub-par ventilation, no shoulder room, and seats that recline roughly 5 degrees! But, coming in with an expectation of red-carpet treatment leads to disappointment and stress.  Likewise in medical practices some patients enter with an unreasonable expectation, either of services, results, or often both.  The end result is typically disappointment and frustration.

When we enter into medical treatment, particularly ongoing management of a chronic disease like diabetes, we need a similarly appropriate set of expectations.  I encourage patients to write a list for themselves before going to any new patient appointment. On that list write down your goals, for disease management and life. If you have a goal of losing 40 pounds, but also have a goal of being able to engage in your family and cultural food traditions, that is important to know! One goal may have to bend a little to allow for the other.  If your goal is to make massive changes in your diabetes management, at the same time your goal is to graduate from medical school while backpacking through Europe, something might need to give, or accommodations may need to be found. Putting these on paper allows us to look over our goals and really do some self searching on our priorities and how realistic we are being. It also helps us remember them in the whirlwind of questions that is a first appointment. The next thing to write down is your “must haves” and your “can’t stands”.  If it is important to you that you can contact your healthcare provider via email, it is important to ask about that! Do you absolutely hate being bounced between four different doctors in the practice without knowing who’s coming in the room? Check into that!  Start off the relationship with open communication and clear expectations.

Make your goals known, then be open.

We are going to a healthcare professional because we are seeking knowledge and skill we do not possess. Going in with a predetermined cause, diagnostic plan and treatment is counter-productive. Be open to the knowledge and skill of the professional you are seeing to speak into the situation and quite possibly reveal options you had not even thought of.  Many people bounce from one physician to the next waiting to hear their own opinions and desires echoed back to them. Not only is this counter-productive and frustrating for everyone involved, it can lead to major risks to your health! That medication you thought would be the fix, may carry side effect risks that outweigh its benefits for someone with your health history. That diagnosis you were so sure was the right fit may actually be masking a much more complex  issue that would not be otherwise addressed.  So it is important to go in with open ears. Take notes so that you can process and think things over in a less stressful space following the appointment.  Be prepared to end the appointment process like you started it, with some self reflection. Did the doctor’s advice rub me the wrong way? Is it possible that there is an area of stress that has me extra sensitive to that area?  Did I leave the appointment without my questions answered? Was the educator rushing me, or did I not actually ask my questions specifically? Did I just agree to a course of treatment just to be agreeable and get out of a stressful environment, or do I really agree and feel like I know what I’m getting into?  Did I look for another opinion with the goal of getting the full picture, or am I looking for someone to tell me what I want to hear? Am I engaged in this process as the central active participant or am I waiting for those around me to somehow make things happen? That time of reflection is not easy, but it is vital.

Also be sure to adjust your expectations of wait times. Airports are highly complex operations with a lot of moving parts. One unforeseen issue can cause major delays and back-ups. It is frustrating when we are delayed, but when you think about all the tiny moving parts that have to happen in the right time and the right order, it is really pretty amazing that anyone gets anywhere at all! Likewise practices have a lot of moving parts and timing can be difficult to keep on track when the human component is involved. There is a fine line between poor time management, and a storm blowing through. So set expectations with a bit of ease built in.

Similarly, our bodies are incredibly complex organisms with an incalculable number of interdependent moving parts. It is extremely rare that any medical issue can be solved with one appointment, one medication, one change or one analysis.  I remind patients that problems that are easy to solve are so big you don’t want to have them! Heart stopped? Defibrillate! Breathing stopped? Intubate! Simple solutions are very rarely what we want for our bodies.  Diabetes in particular is a highly complex chronic disease that is impacted by every facet of our lives. Improving management takes a good amount of time, effort, diligence and cooperation to achieve. So set expectations accordingly. If you want to be in a bad way, go for a quick fix. If you want life-long improvement, settle in for a longer flight.

When we fly there is an initial ramp up of intensity with take off. The pilot pushes the plane to the limits of technology to overcome gravity and get airborne. We often don’t think about how amazing and stressful this time is. It is uncomfortable for us as passengers and people tend to get upset that they can’t move about, get a drink, use their devices. We get impatient, but just take a moment to think about that period of time. This plane full of people has been sat, tethered to the ground by gravity, a decision was made to make a massive change, and speed ramped for take off. The plane must now struggle for a period to build momentum, gain altitude, fight gravity and air resistance, heat from friction and gravity hungrily pulling it back down, to reach a safe and effective cruising altitude for safe  and effective travel. Too low and we spend too much time narrowly missing obstacles, too high and we are risking sickness and mechanical failures. The pilot keeps a close hand on the instruments and guides the plane through an intense time to get to cruising height. Meanwhile they are communicating a lot with air traffic control, copilots, the air crew and updating passengers. .  We can feel it as passengers, can you imagine what the pilot or the PLANE is going through?!  It is little wonder that it is take off that makes people most afraid. We have to practice an amount of trust that it won’t all be this way, things will level off, we will get to a cruising altitude and we will get to our destination.  But this is NOT the time to demand a beverage! This is NOT the time to ask for a seat upgrade. This is the time to remember the safety instructions, remember why you started the journey to begin with and have some reasonable and healthy trust in the skills of the pilot and the stability of the process that has gotten millions of people safely aloft and back again.

Starting a diabetes management journey is very much the same. There is a ramp up of motivation until we finally make the step to make change and take off on a new journey. There is an initial period of strain as we analyze, adjust, course correct and communicate. It is intense, there is physical and mental strain. Sometimes things get bumpy. It is a time when things feel their highest risk. The thought of cruising safely seems distant, and we are definitely not at our destination!

In fact did you know that very often when your plane takes off it is actually not going toward your destination? Planes often take off at a trajectory that allows for the greatest safety, clear of obstacles, make a gradual turn before accelerating toward their destination.  This is often true of your medical world as well. Your healthcare team may initially start things off in an unexpected direction to ensure safety and the smooth journey ahead, rather than aiming perilously toward the goal from the start.

Diabetes is dynamic, it’s highly individualized, and it’s a constantly moving target.  Some people come into our practice with an expectation that we will give them the magic set of numbers and actions to make their A1C perfect, their lows nonexistent and their CGM graph a predictable graceful line. My answer is that if they find someone to do that, they need to tell me, because I want that for myself! I’ve studied this thing, read the books, taken the classes, crunched the numbers, and I still say the phrase “What the –?!” more often than I like. Technology isn’t perfect, my body likes to do things without letting me know, weather delays happen even in my metabolism. (Seriously: heat, cold, rain, high pollen, longer days, gardening, baseball, spring time in the Mid-Atlantic is its own fun to deal with when it comes to blood sugar management)

The secret to getting the care you need is to set your expectations appropriately. Not so low that you will take whatever you are handed, scraping the ground and just happy with any landing you can limp away from. But not so high that the oxygen masks drop the crew is exhausted and you lose it and pull the emergency exit slide.

Your altitude has a lot to do with your attitude. Many happy landings!

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By |2018-06-26T20:03:42+00:00June 26th, 2018|Diabetes Bites, June 2018 Newsletter|0 Comments

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