The Emotional Side
(This article appeared in Voice of the Diabetic, Volume 12, Number 4, Fall 1997 Edition, published by the Diabetes Action Network of the National Federation of the Blind. Updated April 2000.)
Diabetes is incurable. It imposes restrictions on your lifestyle, causes a long list of complications, and can shorten your life. To survive, you have to diligently follow a prescribed routine, one you did not choose. On top, you can go blind. Diabetes is not subtle, and the emotional aspects need to be considered.
"Don't it always seem to go that you don't know what you got 'til it's gone," sang Joni Mitchell so many years ago. Diabetes can certainly make that song ring true, for every diabetic lives with the threat of complications. The Diabetes Control and Complications Trial (DCCT) and the United Kingdom Prospective Diabetes Study (UKPDS) proved that the best possible control reduces that threat, whether from type 1 or type 2 diabetes, but a significant number do their best and still suffer major ramifications. Even with what we know today, there is always that dreadful uncertainty.
Understandably, most diabetes education materials focus on the physical aspects of the disease. This is appropriate. But the common emotional ramifications of diabetes need to be taken into account. An individual's emotional state may determine whether he/she prevails, or is felled by circumstances.
"Why ME?" We don't know what causes diabetes. Although we can manipulate statistics and use them to make predictions, we can't tell why a given individual gets diabetes, or any of its ramifications. And tight control helps, but it is no panacea.
Folks used to believe that disability was the result of defective character. If you developed a disease, you had brought it on yourself; you were a "failure." We know better, but too many of us still judge ourselves harshly, blaming ourselves for "being weak." Diabetes is not a sign of weakness.
"What did I do to deserve this?" Nobody gets diabetes, or ramifications, because they "deserve them." We don't know why one person gets it, and another does not. We have to do the best we can. Diabetes can be nasty and unpleasant, but it is not "diabolical." It is not a punishment.
"It will never happen to ME!" Social workers and psychologists are very familiar with the problem of denial, the conviction that in spite of the facts, the rules do not apply in this particular case. The ramifications of diabetes do not manifest immediately, but the more time spent with high blood sugars, the greater the likelihood of future eye, kidney, and nervous system complications. The diabetic who seeks to prove that he or she is "exempt," and "gets away with it," short term, is only increasing the likelihood of down-the-line problems. The literature is full of stories by folks who were "non-compliant" in their youth, but saw the error of their ways about the time their vision began to fail. Denial is a common problem, and one that should be addressed right along with the need for conscientious self-management.
"NO! I'm not BLIND!" Sight loss brings its own denial. There are people who won't use their canes, or learn Braille, or even stop driving, because they cannot admit they are going blind. Some delay learning adaptive skills with, "It's only temporary; I'm sure my sight will come back!"
"What am I going to do? I won't be able to..." While some folks deny they'll ever be affected, others swing to the opposite extreme. These diabetics pay close attention, read the reports, and work diligently, but for them, there are demons under the bed, and every bullet has their name on it. Too many folks are convinced that a diagnosis of diabetes, or the need to start injecting insulin, or blindness, or kidney failure, or any of the other possible complications, means the cessation of life as they know it.
It doesn't. With proper adaptive equipment and training, blind diabetics, those losing vision, even those coping with multiple ramifications, such as blindness, amputation, and kidney failure, can maintain or recover independence, and remain (or become!) fully productive participants in mainstream society. Fear, or the use of fear to encourage diligent compliance, is counter-productive, as we shall see below.
"I'm tired of it!" Diabetes self-management is a discipline, seven days a week, from now until doomsday. There are no reprieves, no opportunity to take breaks, and short of a pancreas transplant, there is yet no cure. There is only the routine, day after day after day.
Some folks thrive. Presented with the facts, the need for multiple monitoring and insulin injections, one young man said, "Of course I will! I want to stay healthy as long as possible!" He was, and is, ready. Others find the prospects daunting.
A lifetime of dietary restrictions, regular exercise, blood glucose testing, and multiple injections or oral medications can become wearing, especially after a number of years with the condition. Some folks get tired of it; others come to hate "doing it because they must." Still others stop believing their own welfare is "worth the fuss." This is "burnout," psychological rebellion against one's duties.
When burnout leads to non-compliance, it is a recipe for trouble. Why do some folks "burnout" and not others?
The answer is attitude. The folks who thrive, who make the best of a less than perfect situation, are like savvy poker players who, dealt a doubtful hand, play it for all it's worth. Often these folks outperform the ones holding the aces! It's not the cards you're dealt; it's how you play the game.
"Positive attitude" can mean so many different things, but here it means a wholehearted belief in one's own capacities, and determination to overcome all obstacles, regardless of how long it takes. If you don't believe in yourself, even the small hills can look impassable.
Loss of independence
"How can I face my friends? How can I get anything done? I can't DO anything!" Too many folks respond to disability, or other trauma, with the "wounded animal response"--flight to solitude, to "lick one's wounds." Up to a point, this is part of the grieving process, the mourning for what must be let go. When it passes, rehabilitation can begin.
But some folks "get stuck" there. Some independent, self-reliant people, high achievers, can be more traumatized by their own "incapacity" than by their actual physical loss. The belief: "I have lost something, and am now less than I was," discourages action. This can occur with most any incapacity, but is not uncommon in cases of sight loss.
An adult type 1 diabetic, for example, may have been self-managing for 15 years or more, before retinopathy put an end to a sight-based lifestyle. Some folks, with positive attitude, good instruction and proper adaptive equipment, make a smooth transition. Others wilt.
It's a question of attitude again, so many times. An individual is accustomed to being in charge, to caring for self and others, and to being "a productive member of society." In his or her mind, loss of sight means the end of their capacity to continue doing so. Feeling diminished, feeling ashamed, the individual withdraws from society, and stays "out of circulation." Belief in his/her incapacity has become a self-fulfilling prophecy.
These people are not lazy. They are not "slackers," taking a long vacation from responsibility. They are in emotional agony, grieving for losses they don't know how to replace. These people need to be shown their options. They need to hear of (or from!) others like themselves, who have looked the demon of self-doubt in the eye and moved forward anyhow. They need support groups and rehabilitation professionals who will respect their self-doubts--and then show them how to overcome them. Some might declare, "You can't teach attitude!" but what you can do is show such a person their options, show them others who have "done it themselves," and then get out of the way.
Nothing about diabetes, or blindness, or any other disability, diminishes a person's human-ness. Loss of sight, or of a limb, or of mobility and independence, does not make one "incomplete." There are no "part-people" out there--we're ALL fully complete, real people.
But it hurts to have to give something up. We are not oxen, facing our traumas with placid equanimity. Fear and pain are perfectly logical responses. Some folks will pass smoothly through the stages of grief, and be ready to learn the necessary adaptive skills. Most will need the support of their fellows and the positive examples of their predecessors, and will need to have their feelings validated. Passing this hurdle, they are ready for, and fully capable of, independent self-management and full participation in the mainstream.
The presence of emotional issues is not a sign of weakness, but of humanity. Any holistic approach to health takes a person's mental/emotional state into account, right along with their specific physical ramifications. We are individuals, and we heal in our own way.