Dan Abraham Healthy Living Center Introduces ICAN to Internal Medicine Residents

Submitted by Jason SoyringDAHLC-Jason

The Dan Abraham Healthy Living Center (DAHLC) hosts two residents electing to participate in the Internal Medicine Rotation at Mayo Clinic.  These residents partake in a 3 1/2 day health and wellness rotation that includes an immersive, hands-on experience into the programs and services that are available to all employees, volunteers, retirees, students, and patients eligible for membership. Not only do the residents acquire an enhanced understanding of how the facility can be leveraged to assist in improving their patients¹ health, but how they can utilize the programs and services to improve their personal health and well-being.

A respectable portion of the rotation provides an extensive look into wellness coaching and communication skills.  In addition, the residents have an opportunity to participate in 3-4 wellness coaching sessions to work on areas of change in their own lives. Again, the purpose of this experience is to allow the resident an opportunity to comprehend how wellness coaching can be of benefit to them and their patients in regards to behavior change.  The feedback around this portion of the experience has been incredibly positive thus far.

Residents are introduced to the Mayo Clinic Wellness Coaching Program¹s 5-E Model and how the different coaching concepts and communication strategies outlined in the model are used to help move clients closer to their health and wellness goals.  These strategies are also introduced in the context of a provider/patient interaction.  This is where Minimally Disruptive Medicine (MDM) and the ICAN Tool come into play. Residents are asked to create a common, but complex patient scenario to bring to one of their peer coaching sessions.  They are then asked to role play the patient and to fill out the ICAN Tool accordingly.  This activity gives the resident an opportunity to understand more deeply the pitfalls of patient capacity and the true burden of treatment and disease. 3478089_0011 Each resident plays the patient role and the provider role as part of the session.

DAHLC resident rotations are offered on an ongoing basis and will be available to Internal Medicine residents throughout 2016.

Introducing the new ICAN tool

We are excited to announce to the Minimally Disruptive Medicine community that the first tool developed to support MDM practice, ICAN, is now available for download.

ICAN is a Discussion Aid for clinicians and other health professionals to use together in visits with their patients to better understand their patients’ capacity and treatment burden. ICAN was developed using a rigorous, user-centered design process that included observations and prototyping in a range of settings with a variety of health professionals (primary care clinicians, specialists, nurses, wellness coaches, and community health workers), making its use broadly applicable. We hope you’ll visit the page (minimallydisruptivemedicine.org/ican/) to learn more about ICAN and to download the tool to try in practice.

Is Diabetes Improvement Too Complex for Patients?

Repost from Linkedin with permission from Jerry Penso

For the past year, I have been exploring strategies for diabetes care improvement with The American Medical Group Foundation (AMGF), planning our next national campaign to address this chronic disease. As a result I have had many conversations with national diabetes experts, medical group endocrinologists, primary care physicians, and quality improvement specialists. In AMGF’s first national campaign, Measure Up/Pressure Down®, we promoted systematic care delivery improvements to improve high blood pressure detection and control. With the aid of this improvement framework, teams were able to figure out what to improve, measure it, and test changes in the system to see if they made a difference. Our goal is to create the same kind of targeted improvement in the care of diabetes.

Recently, I became familiar with two AMGA members that are demonstrating outstanding performance in diabetes management: Cornerstone Healthcare, PA, in North Carolina and Geisinger Health Systems in Pennsylvania. These two health systems have achieved better quality for tens of thousands of patients with diabetes through careful workflow redesign—automating manual work, delegating duties to non-physician staff, standardizing treatment algorithms, and measuring key outcomes to report back to their physicians. These efforts have made quantifiable reductions in complications due to poorly controlled diabetes, including diabetic retinopathy, heart attacks, and strokes.

Two conversations in the past month have begun to alter my thinking about AMGF’s upcoming campaign. One was with Lorraine Stiehl, Consultant, Stiehlworks and Board Member, JDRF who is an advocate for people with diabetes and also works closely with organizations that promote patient empowerment, like diaTribe and Diabetes Hands. What struck me after talking with Ms. Stiehl was the tremendous yearning among patients for better conversations about the day-to-day existence living with diabetes. They look to their healthcare professionals for information, care, and support, yet many are not finding the current system responsive to their daily needs. So many are turning to social media in greater and greater numbers to address these unmet needs, especially emotional support.

I was also impressed by a conversation with Dr. Victor Montori, an endocrinologist who serves as director of late-stage translational research for the Mayo Clinic Center for Clinical and Translational Science. Dr. Montori is a leading proponent of minimally disruptive medicine (http://minimallydisruptivemedicine.org), an approach that seeks to advance patient goals for health, health care, and life. He emphasized the need for care teams to design interventions that respect the capacity of patients and caregivers, and systematically reduce the burden of treatment. Today’s diabetes care increasingly involves complex treatment regimens, yet these recommendations often ignore the tremendous burden this places on a patient with chronic conditions.

The question I now ponder is how we move the needle for populations of patients with diabetes, while honoring our patients’ personal needs, wishes, values, and capacity for change. We’ll want to promote systemic, standardized approaches to performance improvement because we know many patients with diabetes are not at optimal target range and are at risk for serious complications. At the same time however, we must continue to be vigilant in developing interventions that do not create undue burdens or unrealistic expectations for patients, care teams, or health systems.

Jerry Penso

Jerry Penso is Chief Medical and Quality Officer at American Medical Group Association

Debriefing the NIH Training Institute for Dissemination and Implementation Research in Health: what can minimally disruptive medicine contribute?

By Aaron Leppin

Just last week I had the privilege of attending the NIH’ 5th annual Training Institute for the Dissemination and Implementation of Research in Health (hyperlink). The objective of this program is to train and develop a cohort of researchers with expertise in promoting and evaluating processes that translate evidence into practice.

Consonant with an MDM-based approach to care, the desire of implementation science is to ensure that the safest and most effective care is delivered to patients reliably. Traditionally, this field has focused its efforts on overcoming the underuse of evidence-based interventions. We now realize, however, that many interventions are implemented in practice that are of low or no value. What has become increasingly clear to me in my own research, however, is that many interventions become less effective and/or fail to achieve their full impact as a result of the way they are implemented. This idea, termed “mis-implementation,” is related to but distinct from the misuse of medical interventions.

In 2014, Prasad and Ioannidis outlined the evidence-based rationale for “de-implementing” contradicted, unproven, and aspiring healthcare practices (Imp Sci. 2014; 9:1) (hyperlink). This paper has been well received by the implementation science community, yet no clear and actionable guidance exists for practice-based efforts to de-implement interventions or, for that matter, to avoid mis-implementation entirely.

I am struck by the collective capacity of the MDM community to guide this emerging science. How does our expertise in evidence-based medicine, over-medicalization, and implementation science coalesce in this space? I have my ideas but am interested in others. What are examples of mis-implementation that you have experienced? How were you able (or unable) to overcome these challenges? How have you de-implemented ineffective interventions?

Number One in 20 Years of Publications

Originally Published in Inside Mayo Clinic Research on Aug. 14, 2015 

Having your research published in The BMJ, the prestigious medical publication formerly known as the British Medical Journal, is an accomplishment in itself. It’s another, altogether, to have the journal’s editor in chief call out your work first on the list of the 20 most extraordinary articles published in the past 20 years.

Dr. Victor Montori

“Victor Montori and colleagues changed how I thought when they introduced me to the idea of minimally disruptive medicine,” wrote Fiona Godlee, BMJ’s editor in chief, in the journal’s July 9 top 20 edition.

For those who haven’t heard of it, minimally disruptive medicine seeks to advance patient goals for health, health care and life, using effective care programs designed and implemented in a manner that respects the capacity of patients and caregivers and minimizes the burden of treatment — the healthcare footprint — the care program imposes on their lives.

In other words, they’re trying to make health care easier for patients — less burdensome, less confusing and less time consuming. This is particularly so in the management of chronic conditions, such as diabetes and depression.

Tucked into a small workspace in the Plummer Building, on Mayo Clinic’s campus in Rochester, Minn., members of Knowledge and Evaluation Research (KER) Unit work tirelessly to improve the patient-physician encounter and promote what they call a “patient revolution.”

KER Unit image-WP2It’s not a violent revolt or a bloody coup, but in many ways it does represent an upending of the current medical system. This revolution seeks to shift power away from providers, payers and health care institutions — the ivory towers of medical care in the U.S. — and puts that power instead into the hands of confident and well-informed patients.

The work in the KER Unit, however, is only as good as the clinical services and departments who share their patient experiences and then work together to help shape a better encounter for everyone.

“Our work would be nothing without our collaborations from across the clinic,” says Victor Montori, M.D., an endocrinologist and medical director of the KER Unit.

Dr. Montori’s deference and the KER Unit’s humility are certainly in keeping with Mayo Clinic’s collaborative, one-hand-washes-the-other culture. They don’t really want the recognition, they say. They would prefer to recognize their many partners.

And so, here they are: Partnering departments include Cardiology, Endocrinology, Emergency Medicine, Gastroenterology, Pharmacy, Primary Care, Psychiatry, the Office of Population Health Management, the Mayo Clinic Health System, and the Mayo Clinic Care Network.

The invisible work of managing your medical information

By: Jessica Ancker and Holly Witteman

It’s no secret that it’s a lot of work to be sick. Being diagnosed with a serious illness can open the door to scheduling extra doctor’s appointments, researching medical options, taking medications, investigating insurance benefits, and even changing what you eat and drink.
In our research project, we found that there is also another type of work involved in living with chronic illness. People managing their health also need to manage their medical records. This means doing things like transferring information from doctor to doctor, tracking information about treatments and hospitalizations, and correcting mistakes in records. We called this type of work “invisible” because although it takes a lot of time and effort and is an important step in getting good medical care, for the most part, even patients’ own doctors and nurses may not be aware of the work that patients must put into these tasks.
We interviewed 22 people in New York City, each of whom had at least 2 chronic illnesses (including diabetes, chronic pain, depression, HIV, hepatitis C, and a wide range of other conditions). Because of the complexity of their medical conditions, these people saw an average of 5 different doctors.
These interviews showed that transferring patient information from organization to organization was extremely important. One man told us that his surgery had to be canceled because laboratory test results from his primary care doctor didn’t get delivered to the surgeon on time. Another told us that one of her medications was discontinued because the insurance company said the physician had provided insufficient information about her condition.
But what to do to prevent these problems in current systems was somewhat less clear.
We found that people had different approaches to the challenge of getting their information moving across institutional boundaries. Some patients (especially those who had had bad experiences in the past) took a very active role in obtaining copies of their records, test results, and other information, and sharing it with all their doctors. Other patients said that they expected the healthcare system to take care of this task for them. “They’re supposed to have all the information. They’re supposed to look it up,” said one person.
When patients took the lead in transferring their own medical records, we found that they approached the problem creatively, using a variety of solutions. Some of them memorized key pieces of information. Some of them kept an electronic spreadsheet that they updated every time they saw their doctor. Others tracked key information (like their medication list) through handwritten notes. However, one problem we discovered was that when patients track data about their health, physicians might not really trust that patient-collected data. Doctors we interviewed in our study said they were more likely to trust information provided directly by a doctor or by an electronic tracking device such as a blood pressure monitor.
Another issue we discovered was that patients were making judgments about what information to share, and those judgments were not always the same as what the doctors wanted. For example, patients didn’t bother sharing information that they thought was irrelevant (such as one woman who thought that the treatment she received from her dermatologist was unlikely to be of interest to her primary care doctor). Patients also didn’t bother sharing information if they thought the doctors were already in contact with each other (such as several patients who believed – mistakenly – that doctors at 2 different institutions could see each other’s electronic medical records). Occasionally, we encountered a patient who had privacy concerns about sharing information, but this was not very common among the people we interviewed.
Finally, we found that patients were putting in a tremendous amount of time and effort getting information transferred from one setting to another or correcting mistakes in their records. For example, one man used an electronic account to log into his own medical record and found a mistake. When he tried to correct that information, he was referred from a technical support phone line to a doctor’s front desk staff back to a technical support email address without being able to get the problem fixed. Another one received a home medical device without any instructions for use, and contacted the manufacturer, the insurance company, and 2 different doctors’ offices without success. Several people had lengthy stories about coping with insurance company denials of coverage or other problems.
After these interviews, it is clear that this burden of information management is an additional problem for people with chronic disease to deal with. In our paper, The Invisible Work of Personal Health Information Management Among People With Multiple Chronic Conditions: Qualitative Interview Study Among Patients and Providers, we called this a “systematically regressive tax on illness.”
We think that there’s a role for information technology to help reduce this burden. One solution could be health information exchange technology, which is designed for health care professionals to exchange patient records. Another could be the personal health record, which is designed for patients to keep and manage their own medical information. The first can be thought of as a doctor-focused solution, the second is a patient-focused solution. We think both will be needed in the future so that sharing information is easy and seamless, so that physicians can have confidence in patients’ information, and so that patients who want to do so can take an active role in managing and checking their own data. It will be important to make sure that these kinds of systems are designed for the ways that patients and health care professionals want to manage this kind of information. By designing systems that truly work for the people who will use them, we can reduce the additional burden of invisible work that goes along with living with chronic disease.

JessicaJessica Ancker is an Associate Professor of Healthcare Policy and Research, Healthcare Policy and ResearchWeill Cornell Medical College.  Jessica’s research focuses on the use of health IT by patients and providers, effects on comprehension and decisions, and effects on healthcare quality.

HollyHolly Witteman is an Assistant Professor, Tenure Stream, Department of Family and Emergency Medicine; Office of Education and Continuing Professional Development, Faculty of Medicine, Université Laval, Quebec City, Quebec, Canada.  Holly specializes in the study of interactive media for health communication and decision making, focusing on contexts that require communicating numerical data, interpreting risk information, and trading off risks and benefits.

Patients’ experiences of treatment burden: so much more than a series of physical side effects!

Living with a long term condition is hard work.  No-one would argue that coping with chronic pain, breathlessness or fatigue isn’t difficult, nor that health services and professionals shouldn’t do what they can to try and relieve these symptoms.  The benefits of medication, surgery and rehabilitation are undeniable; they save lives and reduce symptoms for millions.  But in the search for cures, have we underestimated the costs and disruptions that treatments generate for patients? And when patients ‘fail’ to follow health professionals’ recommendations, why do we assume that the problem lies with the patients and not the treatments? These are important questions that the Minimally Disruptive Medicine movement and our recent review paper seek to address.

We systematically reviewed the qualitative literature on treatment burden and identified a total of 11 papers which investigated patients’ (and sometimes also families’) perspectives of treatment burden; what it felt like to live day-after-day with often complex treatment regimes, the negative impacts they experienced  and how they tried to minimise these.  The papers we reviewed provided an international perspective and included participants aged 8-96 with a range of long term health conditions (affecting the cardiovascular, respiratory, digestive, urinary, endocrine, and neurological systems) which varied in terms of the severity, criticality and impact of both the disease and the treatment.

We identified eight classes of treatment generated disruptions : physical symptoms and side-effects; negative emotions; stigma and identify disruption; loss of meaningful activities living with uncertainty; loss of freedom and independence; feeling isolated and inadequately supported; and,  experiencing relationship strain. Our paper provides definitions for each of these and quotes from patients to help explain and illustrate what treatment burden ‘feels’ like.

Looking at this list of impacts, I think it is clear that the experience of treatment burden is much more than the list of medication side-effects it is often equated to. Treatment side-effects such as nausea, rashes, palpitations etc are well recognised in medicine; indeed, many papers on treatment burden focus solely on these physiological side-effects. Whilst we found that physiological side effects were important we also identified that in many cases it was not the side-effects themselves that were most significant, but the knock-on impact that those side-effects had on people’s valued activities, relationships and identity.  This aligns with Amarta Sen’s capabilities approach ,  and views healthcare as much more than ‘healing the body’ but rather enabling people to ‘do, feel and be’ ‘what, how and who’ they choose (read more in this excellent paper by Vikki Entwistle and colleagues). Viewed from this perspective, treatments are only effective when they not only relieve the original symptoms but when they also do not compromise people’s capabilities to function as they wish in all domains of their life (physical, psychological, social and relational).

This review also identified how people attempt to avoid or minimise treatment burden. One  approach to minimising BoT was to psychologically normalise treatments through self-talk and reframing. Alternatively, many patients stopped or modified their treatments. We called this ‘rationalised non-adherence’ to reflect the rational nature of these acts when seen from the perspective of people trying to maximise their capabilities and life quality. Clinicians working in end-of-life care appeared comfortable discussing and supporting non-adherence decisions; however, in other healthcare arenas patients’ non-adherence was often frowned upon by professionals and became a ‘secret-act’, generating guilt, disrupting relationships and reducing outcomes.

We think that it’s time that the ‘patient-centredness’ agenda is extended to more fully consider treatment burdens and rationalised non-adherence in everyday clinical encounters. Clinicians need to engage patients in conversations that allow them to be honest about treatment burden and discuss adherence difficulties without fear of judgement. Appropriate modifications can then be made that minimise disruptions to all aspects of patients’ lives.

Sara Demain

Sara Demain, Associate Professor, Faculty of Health Sciences, University of Southampton

Sara is supported by a post-doctoral fellowship awarded by the UK National Institute for Health Research. The views expressed in this publication are not necessarily those of the NHS, the National Institute for Health Research or the Department of Health.

Burden of treatment: the work of being a patient

By Tran V-T.

 A patient with type 2 diabetes could spend a little over two hours a day on average following all doctors’ recommendations [1].

About 45% of the population has at least one chronic condition. In addition to the burden of illness, patients are affected by the burden of treatment, defined as the impact of the “work of being a patient” on functioning and well-being. This work includes medication management, self-monitoring, visits to the doctor, laboratory tests, lifestyle changes, etc. Coping with all these healthcare tasks requires a significant amount of time, effort, and cognitive work from patients and caregivers.

We performed a multinational study to better understand the burden of treatment from the patient’s point of view [2]. A total of 1,053 participants in 34 different countries answered a series of open-ended questions about what doctors’ recommendations they found difficult to follow and why and how they adapted their everyday life to their treatments.

Patients expressed how healthcare tasks imposed on them by the healthcare system, such as arranging doctors appointments and filling out paperwork, affects their daily lives,“Being sick also adds a lot of extra tasks, paperwork and appointments. To keep myself healthy, I miss out on a lot of things that people my age take for granted – working fulltime, cooking, showering every day, going out to socialize” (25-year-old woman with Ehlers-Danlos Syndrome from the United Kingdom). We classified these tasks as 1) managing medications, 2) lifestyle changes, 3) condition and treatment follow-up, 4) paperwork tasks, and 5) learning about the condition and treatment (e.g., medication management, lifestyle changes, follow-up, etc.).

Second, we identified the factors that aggravated the burden of treatment. They were both structural factors (e.g., medication is not available at the pharmacy, access to test results, lack of coordination between care providers, wait lines, lack of parking space, etc.) and personal factors (patients’ beliefs about their conditions and treatment and difficulties they could have in their interactions with others). For example: “Trips to hospital at least every three months (are) burdensome because of distance and also parking charges. Annual reviews are difficult because there are multiple investigations required and these take place over multiple different appointments and sometimes at different hospitals in the same group.”(55-year-old woman with diabetes and a cardiac condition from the United Kingdom).

Finally, patients reported consequences of the burden of treatment, which could lead to poor adherence to treatments, financial burden, impact on professional, family and social life. For example:There is stuff that I am SUPPOSED to do, and stuff that I actually DO.  If I did everything I am SUPPOSED to do, my life would revolve around doctors and tests and such and there wouldn’t be very much left for living my life.  So I’ve made a bunch of choices (with the input of my family and friends, because it’s important for me to have their support).”(46-year-old woman with a mitochondrial disease from the United States).

To our knowledge, this is the first study to provide a comprehensive view of the components and consequences of the burden of treatment across multiple countries, settings and treatment context. Our findings fit the Cumulative Complexity Model [3] in that the burden of treatment perceived by patients is a complex phenomenon resulting from the combination of 1) the workload of healthcare imposed on patients; 2) patients’ capacities to integrate this workload of healthcare in their daily lives in terms of energy, time, money or support; and 3) the context, especially the structure of healthcare and social support from their families, relatives, and friends.

Our findings have several implications. First, our results may help clinicians better understand and identify patients who are overwhelmed by their treatments. In a previous study, we have shown that physicians fail to assess the burden of treatment of their patients [4], partly because it expresses a patient experience that is not shared in depth during consultations [5]. Second, healthcare should be integrated and coherent: every therapeutic intervention imposed on patients should be carefully weighed in terms of clinical benefit, interaction with other treatments, possible harms, and potential burdens. Such consideration could result in the prioritization of tasks and a net reduction in healthcare tasks imposed on patients. Third, this study highlights the need to change the paradigm of care for patients with chronic conditions and end fractured care focused on individual conditions. Treatment objectives should not be based solely on attaining specific goals in specific diseases but also on mitigating the impact of conditions and treatments on patients’ professional, family and social lives, for minimally disruptive medicine.

This preliminary work opens the door for more studies about the burden of treatment. As of today, researchers have only considered the burden of treatment for individual patients. I strongly believe that capacities of the patients’ families play a significant role in how patients can cope with the burden of treatment. In a future work, we would like to investigate this area.

IGroupe2n addition, our research has highlighted several aggravating factors of the burden of treatment (especially structural and personal factors) which could be targets for intervention to reduce the burden of treatment and improve patients’ quality of life.

Burden of Treatment decision aid


  1. Russell, L.B., D.C. Suh, and M.A. Safford, Time requirements for diabetes self-management: too much for many? J Fam Pract, 2005. 54(1): p. 52-6.
  2. Tran, V.T., et al., Taxonomy of the burden of treatment: a multicountry Web-based qualitative study of patients with chronic conditions. BMC Med, 2015. 13: p. 115.
  3. Shippee, N.D., et al., Cumulative complexity: a functional, patient-centered model of patient complexity can improve research and practice. J Clin Epidemiol, 2012. 65(10): p. 1041-51.
  4. Tran, V.T., et al., Development and description of measurement properties of an instrument to assess Treatment Burden among patients with multiple chronic conditions. BMC Med, 2012. 10: p. 68.
  5. Bohlen, K., et al., Overwhelmed patients: a videographic analysis of how patients with type 2 diabetes and clinicians articulate and address treatment burden during clinical encounters. Diabetes Care, 2012. 35(1): p. 47-9.

REPOST: Burden is a Heavy Word BUT Capacity Can Lighten It

This is a repost from Naturally Sweet Sisters from March 3, 2015

 I recently had the pleasure of listening to a presentation called Minimally Disruptive Medicine with Victor Montori, MD, @vmontori brought in by Joyce Lee, MD, @joyclee through the C3N Project, #c3n an exciting collaborative group of clinicians, patients, researchers that are focused on creating patient-centered care for patients with diabetes.  

While Dr. Montori worked extensively with patients living with Type 2 Diabetes, I still found the idea of burden and capacity as deeply meaningful for our world of T1d.  So much so, that I wrote down a few thoughts to help encourage other clinicians and researchers a clear way to understand what patients and caregivers deal with ‘behind the scenes’ of a three-month clinic appointment. 

How do some patients fare better than others?  How do we share those things that make some patients more successful?  The nagging unanswered questions remain.  At the end of this article, I tacked on some positive skills that we as a family have incorporated and continue to use today.  I don’t know if there is a right or wrong way to approach this – I just know there are better ways.

This isn’t typical content for Naturally Sweet Sisters, but I believe from places of darkness, there can be much good – like care that is centered around what a patient truly needs.

Don’t forget to find us on Twitter @natsweetsisters  #c3n #makehealth 

I own a car.  Maybe you do as well.

If you choose to own a vehicle, than you accept that you must care for the car; such as purchase gas, perform maintenance checks and pay for repairs.  You also accept that in order to drive the vehicle, you must obtain a driver’s license and purchase car insurance.  Mostly (and all of us on the road hope for this!), you accept that you need to obey traffic laws and drive in conditions that allow you to be prepared for anything that you could jeopardize your vehicle ownership, such as locking the doors at night or stowing the vehicle in a garage during inclement weather.

While this is actually a burden (think in terms of money, time, effort, wasted thought), I bet no one would ever consider it as such.  The alternative to a car is being stuck hitching a ride on public transportation, a bicycle or horror of horrors in this day and age, your own two feet.

The burden of owning a car doesn’t overwhelm me because I created the capacity to easily bring it into my life.  I have enough financial, emotional and physical space to allow for a vehicle to not overpower my well-being.  Within my personal limits, the burden of a vehicle can be managed.

Let me emphasize my enjoyment of owning a vehicle, take one look outside my window at the current mid-western weather of March snow, sleet and sub-zero temperatures, and I think you would be pretty happy to not have to trudge to a bus stop.

Let’s take this positive vehicle burden analogy and compare it to the burden of Type 1 Diabetes (T1D).

Unlike a car purchase, we did not choose to bring T1d into our home.  

Unlike a car purchase, there is no other option.

Without a choice (or maybe because the choice was too horrific to consider), we forced ourselves to accept the steep learning curve that comes with the maintenance of 24 hour/7 days a week, blood sugar checks, manual or electronic logs, insurance coverage, diabetes supply scripts, orders, purchases (injection needles, multiple insulins, pens, pen needles, glucagon, insulin pumps, cartridges, reservoirs, tapes, continuous glucose monitors, lancets, test strips, needles, adhesive wipes, unisolve, neosporin, numbing cream, alcohol swabs, glucose, juice, candy and more such as other medications), the clinic visits, the endocrinologist, CDE, the on-call physicians, the ER visits, the insulin dose changes, medical records, the outreach support, the specialist visits, the school caregiver education, 504 planning, fundraising and advocacy.  SO.MUCH.ALL.THE.TIME.

We were forced to accept all of these things immediately because the burden was laced heavily around the body of a tiny three-year old little girl that we deeply loved.  Our capacity for love is endless and that has always been the reason we could manage the burden.  Even for a second diagnosis in an equally loved eight-year old little girl.

As much as I tend to tuck that heaviness away and disguise it in the love that I feel for my children, it does rear it’s ugly head from time to time.

Burden is a heavy word.  

Like in the morning where I am busily reading our daughters for school and a pump alarms a low battery alert.  Fumbling through the steps to change the battery; prime, load and fake out a cannula fill, I make a mistake.  In my hurry, I miss the obvious low cartridge of 10 units of insulin or less.  This second process makes me repeat all of the first steps; prime, load and fake out a cannula – EXCEPT I decide that I might as well change out her infusion site too, so a real cannula fill comes but only after I poke her with a sharp needle, which then her tears tell me she DID.NOT.LIKE.AT.ALL.

The burden weighs heavily on me as I hastily wipe her eyes and pretend that all is well so that I can get her to school on time.  It hits again when I drop her off and watch her walk into a school where most certainly, no other child had to take a shot to get there.

When I get home, I remember that I forgot to make a change to her insulin to carb ratio, which means that yet again, I will need to handle her pump and disrupt her after school play time.  The burden feels even heavier as I think about the scratch that I saw near the cartridge cap on the pump and wonder if I need to call her insulin pump company to report a possible warranty issue.  Since my daughter is now at school and I can’t find her pump serial number, I add it to the mental check list of items that will be performed when she is back at home from school.  Then, I force myself to begin to think of the work that I have actually been hired and paid to do.  The burden never fully resolves as each day brings a new set of circumstance.

Burden is a heavy feeling.

My days are full of types of wonder.  Trying to act appropriately for the psycho-social restrictions that T1d dictates and hope that my daughters, ages 11 and 13 and managing a day at school, changing classes, without an aide or a school nurse.  Left to much of their own skills, we have worked out secret plans and strategies in which they test blood sugars and text me.  My “wonder” is akin to worry at times when those checks/texts are missed and I am left hoping that all is well.  I then wonder at the amount of self-control that I possess and I wonder at why I do.  Is it perhaps the clinical distance that I have forced myself to take in order to raise successful, independent children.  There are more times that I can count in which I just wanted to keep them safely at home, where I can ensure that they are fine under my watchful eye.

As they come home from school, I stifle the urge to ask their blood sugar numbers before they tell me about their day.  Catching my older, savvier child’s eye, I wonder how much she knows and if she is holding back from telling me about the unpleasant side of attending school with T1d.  I listen carefully.  I can’t make mistakes because the burden is laced heavily in the parents trudging along before me which warn that helicopter parenting leads to noncompliance in teenagers.  Or worse, parents that ignored the signs of depression.  Instead, I wait and listen to stories of the day, ensure they eat a healthy, protein rich snack that keeps blood sugar from skyrocketing before we eat dinner an hour later.  When they are gone, I fetch their CGMs for a quick review and double check backpacks to make sure they have enough low blood sugar supplies for the next day.  The burden is that T1d sucks much of the joy of regular interaction with my children.

Burden is a heavy state of being.

There are a few moments in which I procrastinate and then, feel guilty.  It comes as I lie in bed and listen to the CGM give its first bleep of warning which is programmed at UNDER 90 mg/dl.  I hear it and I wonder if my sleeping husband is also listening.  Without a sound, I wait a moment longer and then feel a guilty rush for not running right out the room.  The burden whistles softly as I hand out a juice box in the dark while making as little noise as possible so she can sleep.  My head, tired from eight long years of sleep deprivation is heavy as the weight of a ton, but the guilt is in that thought of self-pity, is that I am not the one with the ‘real’ burden of T1d.  The sweet sleeping cherub that I awoke for is the one to be most concerned for.

The burden flows heavy through the early alarm and as I struggle out of bed just a few hours later to wake my girls, I must first check their blood sugars and pre-bolus their breakfast insulin.  Even heavier burden comes seconds later as the resulting number for one of the girls, is much too high for our upcoming clinic appointment.  Feeling heavily defeated before the A1c has been performed, as we have steadily increased her insulin ratios against the swarming tide of growth and puberty hormones to no avail. Later, I will try to call in her numbers but will have to wait through the standard time of 36 hours for a call back.  By then, her numbers will have stabled and I will be faced with the question of what to change, especially during the night, when she (and I ) most need our rest. Stuck in an uncomfortable position because when I decide not to implement the changes, I must then explain why to endocrinologist that may feel like checking over night is something patients only need to do for the first few months. I wonder why I sent in the numbers at all as it just increased my burden tenfold.

Burden, in all it’s heaviness is always there.  It ebbs and flows but it is never quite alleviated.  We may pretend it doesn’t matter, but it does.  When T1d patients think of a cure, they are looking for relief of that burden.

And YES!  A cure would be the ultimate relief.

We have learned other ways to minimize burden (and while it is not perfect, it can be helpful).

1.)  We embraced T1d education and continue to do so.
Read everything.
Ask questions.
Establish a solid team (parents, child, school, clinic and coaches/caregivers)
Never stop trying new things.

2.)  We prepare for not one T1d event, but for at least three in advance.  
Keep a calendar.
Map out the day.
Squirrel away food, meter and pump supplies.
Have a plan.
Understand that mistakes will be made and you will head back to #1 and learn.

3.)  We redirected our world to better suit our T1d needs.
Learn to say no.
Learn to say what you need – not just what you want.
Learn to forgive.
Learn to heal.
Learn to accept.

4.)  We simplified T1d.
Become a hacker, designer, creator, risk-taker.
Make it easier to do what needs to be done.. IE, by creating T1d stations everywhere you spend time. Look through new eyes at common things.. IE,  make a linen closet into a supply closet.
Friends shying away from sleepovers? Have them at your house.
Dinner with night owl friends?  Suggest appetizers before you go.
Carb counts missing?  Use an app, book, or best guess and check again in an hour.

5.)  If it isn’t working for your T1d, than let it go.
This is true for processes and people, including members of your team.

The positive of our T1d burden is that even though it is always there, we have continue to have endless amounts of capacity to care for our child, simply because we love them.

I would love to hear your thoughts on burden and capacity.  Tweet me @natsweetsisters or drop a line at our facebook page, https://www.facebook.com/naturallysweetsisters or leave a comment on the blog.