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Treat the Whole Patient

Nicole Johnson

I just realized my 15th anniversary of living with diabetes. Because of that, I feel compelled to share my diabetes reality – especially considering your celebration of entering into the phase of clinical care in your training. I would hope that through my stories and comments you would hear a theme – that the patient is more than numbers! That the patient is more than clinical data. That the patient needs TLC from every angle in life – including healthcare professionals. That the patient is not alone in living with and dealing with disease, but that the family is also in the midst of turmoil and trauma. To truly care for patients – especially patients with chronic disease – we must see the whole being: Body, Mind and Spirit and that patient’s community of care.

So, in my 15 years living with diabetes here is a little slice of my diabetes reality….
I have given myself nearly 55,000 shots to stay alive!
More specifically:

  • 44,000 finger sticks
  • 7,300 insulin injections
  • 1100 insulin pump site changes
  • 1500 symlin injections

It is amazing to live with this disease in this day and age. Just 35 years ago, glucose testing was not a reality. Modern insulin pumps were a mere dream. The pumps that were available were the size of a big brick. In fact, that is what they were called – The Blue Brick!

Continuous glucose monitoring wasn't even a blip on the radar of reality, not to mention the medical guidelines that have changed and morphed for people with diabetes: lower A1c’s, lower carb diets, and the notion that extreme exercise and pregnancy are okay. Can you believe many of these 2009 staples in diabetes management were debatable theories just decades ago!

My course with this disease did not begin with such optimism or positivity. It began with a massive thunk. That thunk was all of my dreams crashing down. I was told in the first days of living with diabetes that everything I wanted out of life was impossible because of my new condition. I was advised by my healthcare professionals to drop out of college, move home with my parents, choose a predictable and calm career, and to not pursue motherhood. I was also told that I should avoid competitive environments because they were not a safe place for people with diabetes.

Unfortunately I believed that advice, mainly because I didn’t know any better. Clearly, my ignorance didn’t last long and I learned that I was the only one who could determine my potential. I also learned that if I was committed to intense management of my diabetes, my dreams could be realized. Today I have two master’s degrees and a job in television. I have flown over 3 million miles educating people about diabetes, and in 2006 I gave birth to a perfectly healthy child. Oh and there was that competition in 1999! I guess there are some forms of advice that are meant to be challenged. But that doesn’t change the purpose of my story. I want you to always keep in mind the power of your words, your expressions, and your reactions when you are communicating with patients and patient’s families. So often both are searching your face and your tone for hope. Beyond the medical advice you impart, there are also incredible opportunities to touch patient hearts and souls with motivation. Are you willing to be open enough to allow that to happen? Are you willing to be contemporary in your approach and tailor your disease management to the patient’s reality? This is a secret to success from where I stand. Consideration of the patient’s environment and lifestyle, and tailoring care and recommendations around such will lead to greater quantitative success.

So how do I manage as a patient with a chronic disease and what ideal would I like in diabetes care management?

Well, my coping happens with a lot of help – family support, medical support, social support, and my faith. That support has helped me believe that diabetes does not have the power to steal life’s joys from me. I believe from the education I have received, that diabetes can be a blessing to my existence. I also believe that I have worth, regardless of challenge or obstacle. Getting to these beliefs however, was not easy. It took plenty of time, patience, and care. My experiences with health care professionals that chose to both see and not see me allowed me to learn the difference in care philosophies. It also allowed me to understand what I, and I believe most patients, need to succeed in diabetes care.

What do I mean by that? I mean there is incredible value or damage that can come from healthcare provider/patient communication. In my life with diabetes I have experienced the range on this communication spectrum.

The “good” happened during my pregnancy when for the first time in my years with type 1 diabetes I felt “seen” by my healthcare provider. I felt “invited” to be a part of my healthcare team. I was invited to participate in research and contribute to the knowledge base. The feelings and realities in this experience did more good for my diabetes care than any single recommendation or therapy in my life with the disease. There is value in engaging the patient in a real way and then connecting with the patient in an authentic, believable way. There is an old adage that says, “You must be believed to be heard.”

The “bad” happened as a result of a routine endocrinology visit where I asked to have a copy of my lab results faxed to me. When I received that fax, next to the A1c value were the words, “This is bad.” In reality, the A1c value was near the ADA recommended level of 7% at the time, but that is beside the point. The use of the word “bad” was an indictment on my behavior. It was a generalization made without context or knowledge. This left me, as the patient, nervous about future healthcare visits, depressed, angry, and somewhat unwilling to retest my A1c. Again, this is to the point of compassion, understanding and appropriate communication.

Communication extends beyond words. So many times in my care I have only seen the top of the professionals head. Their eyes never made contact, their hands never felt my nervousness and frustration, and my heart was never addressed. Care is incomplete if it does not address the whole patient including all senses.

It is so important to keep the Education philosophy in mind when you consider how to mold your communication style. Science has proved that there is not a “one size fits all” way of learning. To retain information it must be said three times and ideally taught in a variety of sensory methods.

Connection is such an important element for the patient to succeed and survive. Diabetes is often overwhelming, it can be lonely and it can send a person into an emotional downward spiral. If you can help build connections, that would bless your patient in incredible ways.

My 15 years of disease have been filled with some pain, but also beautiful moments. Moments and realizations I would have never known without disease. I am grateful for the experience, for it has made me stronger and wiser. Helen Keller once said, “Character cannot be developed in ease and quiet, but only through the experience of trial and suffering can the soul be strengthened, vision cleared, ambition inspired and success achieved. “

I suppose my many moments have lead to an unexpected character experience. Today, I continue my commitment to bridging the gaps in diabetes care and helping others realize their potential despite disease.

Transcript from a White Coat ceremony address given to incoming PA students in Florida, USA.

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