Diabetes is a chronic disease. It cannot be cured, cut or radiated away. Once you have it, it is with you for as long as you live--and requires lifelong care and attention. While research on improved treatments and technology looks promising for the future, today's patients face a complicated, demanding treatment regimen that impacts virtually every facet of their lives. It is the number one cause of blindness and kidney failure in the United States. It also is the number one reason for hemodialysis and kidney transplants in the United States. Treatment delays death but does not appear to significantly improve the annual rate of related complications such as blindness and kidney failure.
Proper medication, diet, exercise and stress management remain the cornerstones of effective diabetes care. However, more than half of the Americans with chronic diseases do not follow their physicians' medication and lifestyle recommendations. Eighty percent fail to participate in adequate physical activity, and half of all prescriptions are taken improperly. This widespread lack of compliance drains the nation of $100 billion annually in unnecessary medical costs and lost productivity.
Because diabetes is a chronic illness, the complex internal struggle faced by patients is ongoing..
What can we as health care professionals do to get people with chronic illnesses, particularly diabetes, to take better care of themselves? As a nurse, a health care consultant and executive performance coach, I have spent much of my career in search of answers to this question. I can tell you what is not going to work. People are not going to make changes in their lifestyles just because health care professionals tell them they should.
Rather, the people who succeed in managing their conditions are people with the understanding, motivation and drive needed to break down the powerful barriers to change. They are people who make changes from the inside-out.
As caregivers, then, we have two jobs. Our first job--the one we have historically been quite good at--is to treat our patients from the "outside-in" through diagnostics, surgical and medical treatments, instructions and self-care education. Our other job is the harder of the two. It is to be the catalyst for change from the inside-out.
To do that, the first thing we must remember is that diabetes, like any significant illness or injury, impacts the whole person--the body, mind, heart and soul. We must understand that a newly diagnosed patient goes through a grieving process, similar to the one we experience when a loved one dies.
The stages are familiar. Shock and denial set in and the newly diagnosed patient asks, "How could that be? No one in my family has diabetes. There must be some mistake." Sooner or later, denial is replaced by anger. "I do not have time for this," the patient says. "I've already used up most of my sick days. Why is this happening to me?" At the next stage--bargaining--patients are still not ready to deal in reality. "Couldn't this just be a fluke?" they ask. "Maybe the tests are wrong. Isn't there something we can do to prevent this? Isn't there just a pill I can take?" Acceptance and adjustment are the final stages--a point where patients are ready to help themselves. Patients may ask, "What does this mean to my life? What do I have to do to get through this?"
Patients who don't follow their physicians' medication and lifestyle advice may be stuck somewhere in the early stages of the grieving process--shock, denial, anger or bargaining. To make matters worse, their stress level in these stages is usually quite high.
A strong self-image, sense of purpose and optimism will naturally translate into motivation to do what's necessary to regain and maintain maximal health.
Stress matters because of the close relationship that exists between insulin, blood sugar and our emotions. In a stressful situation, our sympathetic nervous system stimulates the release of adrenaline and cortisol, hormones that raise blood-sugar levels. Because of their impaired production of or insensitivity to insulin, people with diabetes cannot readily tolerate this increase in blood sugar. As a result, people with diabetes often have difficulty maintaining blood-sugar control during periods of psychological or physiological stress. Both anxiety and stressful life events can raise blood-glucose levels, insulin requirements and glycosylated (sugar-bound) hemoglobin levels, reflecting poorer diabetic control.
People under stress often exhibit poor eating habits and ignore the need for exercise. In patients with diabetes, such choices can worsen the existing condition and trigger a latent illness. The downward spiral continues, making it all the more difficult for the patient to participate adequately in managing or treating his or her illness.
Because diabetes is a chronic illness, the complex internal struggle faced by patients is ongoing. The grieving process that accompanies initial diagnosis is just the beginning. Subsequent changes and episodes also can trigger a form of grieving referred to as chronic sorrow. Consider, for example, what happens when people find their disease can no longer be controlled by oral hypoglycemics and must start insulin injections.
The patient may experience shock and denial and claim that he or she can't handle shots. Then anger sets in, and the patient wonders why he or she need shots when he or she did everything they were supposed to.
The patient bargains by asking questions such as: "So what will I have to do to not take the shots? Can't I just eat less or exercise more? Shouldn't we give it more time?" With acceptance and adjustment, the patient is ready to deal with the issue. A patient may say, "This is not what I want to be happening, but if I have to do the shots to protect my eyes and my kidneys, I will. I have so much to live for and I want to be as healthy and whole as possible to do it."
Getting to Acceptance
A patient's internal motivation--his or her sense of purpose and reason for living--must be clear and strong enough to enable his or her to muster the strength and energy to do what's necessary to maintain his or her health in spite of ongoing challenges, set-backs and changes that accompany the progression of the disease.
Even someone facing a life-threatening and chronic disease has the opportunity to regain health and joy in life--often to an even greater degree than before the disease was diagnosed.
We all have met people who suffer and struggle against the limitations and burden of a disease, and who are able to reorganize, absorb and regroup to manage the regime flawlessly. We hear these people say things like, "As painful and awful as it has been, my life is actually much richer now than it was before I was diagnosed."
What makes the difference?
While short-term, acute illnesses and episodes may be adequately addressed with the narrow physical focus of typical Western medicine, successful lifelong management of a chronic disease requires balance and attention from a more holistic view.
To manage a complex, demanding disease like diabetes, patients need real mental, emotional and spiritual clarity about their deepest purpose in life. If patients can answer, "Why am I here?" "What do I want to accomplish before I die?" and "What legacy do I want to leave?" then managing diabetes becomes a means to and end. By starting with our inner being, we rally our strength, energy, motivation and focus to use the outside treatments and support to effectively manage our lives and health.
Conversely, it is unlikely that patients who lack purpose will find the energy, determination, patience and tolerance to comply and effectively manage the heavy demands of their disease. If a person is just tolerating life, hating his job and feeling overwhelmed by the demands of spouse and children, what are the odds that he's going to have the motivation and energy to take on the added demands and responsibilities of managing his or her condition? What would be the point?
A strong self-image, sense of purpose and optimism will naturally translate into motivation to learn and do what's necessary to regain and maintain maximal health--including the complex regimen for diabetes.
How can the health professions help?
Given the acute nature of the onset of diabetes, inside-out attention is often not a priority until well after preliminary diagnosis, intervention and stabilization has occurred. Once that phase is past, any and all resources spent nurturing an individual inside-out is well spent when it improves compliance and outcomes. Two specific ways to help are:
1. Guided Reflection
Education, training and practice in inside-out assistance can be obtained from seminars on guided reflection and processing of life's purpose, joy and self-image. These programs are typically led by an experienced professional coach and trainer who leads the group through a didactic, behavioral and experiential process to discover and build habits around maintaining balance and inner clarity. These sessions typically provide:
A didactic framework for developing participants' individual health practices, including increased sensitivity to the impact of sadness and stress; the importance and interconnection of mind, body, heart and soul; ways to maximize healing and minimize the damage and stress associated with life events; the significance of living out one's life purpose; and the value of living a balanced, focused life.
Exercises to access inner strength and wisdom.
Tools, cues and processes to build and reinforce healthy habits, including relaxation, meditation, imagery, breath therapy, journaling, accountability partners, behavioral strategies and commitment sheets. They also included structured agreements for follow-up and ongoing development of participants' healthy practice and community support.
Introductory sessions typically do not address medical information about specific diseases. They can, however, be tailored to address individual diseases, medical treatments and self-care techniques.
2. Patient Mentors
Education, training and--especially--encouragement by a trained, supervised patient mentor have proven very effective in helping patients learn and incorporate complex medical regimens into their lives. A simple program within a medical practice may provide an informal network for select, willing patients to speak with newly diagnosed or poorly adjusting patients to offer encouragement, lifestyle hints and self-management ideas that have helped the mentor.
The Patient Partners® program for people with arthritis is an example of a sophisticated program that provides complex training and education for health care professionals, as well as for people with arthritis. This mentoring concept is found in many national disease-specific support foundations. The level of patient-to-patient support, however, varies greatly between local regions.
The Impact of Caregivers on Patients
Your interactions with patients with diabetes will be stronger and more authentic if you are fully living your life in as healthy a way possible. Developing, strengthening and enhancing your personal health promotion practices will benefit you both personally and professionally. By fully walking the talk, you will improve your quality of life while gathering first-hand lessons and suggestions for your team members and patients.
Perhaps my best advice is to tell you to personally develop, implement and maintain the best health promotion practices possible. While doing so, pay special attention to areas that would most benefit a person with diabetes. Collect and document information along the way about the resources that provided you with support in the development and reinforcement of your habits. Your personal journey to improved health will be enriched and deepened by the knowledge that you will be able to share your insights and personal experiences with patients who so need your encouragement and wisdom.
This article originally appeared in the November 2001 issue of HME Business.