The Emotional Side

The Emotional Side

THE EMOTIONAL SIDE

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) proved that the

best possible control reduces that threat, 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.

Anger

"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.

Denial

"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!"

Fear

"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.

Burnout

"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 findings

of the DCCT, and the need for multiple monitoring and 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 I 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, and then get out of the way.

The Cure

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 real.

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.