Struggling with Dystonia
by Beka Serdans, RN
LOSS, GRIEF, and EMOTIONS....
Feelings of loss and grief are normal reactions that develop during and
after the
diagnosis of any type of illness. The illness can be either short-term (for
example, a cold or flu) or long-term (for example, diabetes, asthma or heart
disease etc.). Learning to cope with Dystonia is a long drawn-out process
that takes longer than is recognized by society. It is a journey filled with
ups and downs. There will be minutes, hours, days, and weeks when you feel
relatively “normal” from an emotional aspect. At other times it may seem as
if you are taking a step forward and two back. As you continue reading it
will help to remember the following three statements:
1) There is no loss like one’s own loss.
2) There is no grief like one’s own grief.
3) There is no Dystonia like one’s own Dystonia.
Some of the emotions as applied to Dystonia cannot be classified as being
“bad” or“wrong”. You are not expected to control some of the feelings
that may occur as you learn to adjust with Dystonia. Some feelings may
develop slowly over time; others may develop suddenly without warning. Some
of the following information has been based on the works of Dr.Kubler-Ross
who has studied grief and loss extensively.
Let’s take a look at some of the feelings one experiences with Dystonia.
Remember that not everyone copes with Dystonia the same way. Not everyone
experiences all of the following emotions.
SHOCK:
At the time of diagnosis you only hear one word DYSTONIA and you do not
fully comprehend the impact of the word or the disorder. You may leave the
physician’s office feeling “numb”, ”stunned”, ”unable to think”, ”restless”,
and “bewildered”. Shock serves as a cushion allowing you to absorb future
facts and figures about Dystonia.
DISBELIEF-DENIAL:
This is the “it can’t be true” feeling. You may think that all this is
simply a bad dream that will pass. You simply don’t want to believe the
diagnosis. You may constantly question yourself and your health-care
provider about the “truth” of the diagnosis, symptoms, neurologic exams, and
tests.
BARGAINING:
You want things “to be the way they were or used to be”. You hope that
simple wishing will change the course and direction of Dystonia. You may
change eating, sleeping, social, and recreational patterns in hopes of
“making Dystonia go away”. By changing an activity “for the better” you
believe that you will also change your Dystonia. Some people begin to
bargain with God and themselves. These are not easy emotions for anyone.
ANGER:
You may direct anger and/or hostility to yourself, your family and friends,
your healthcare providers, to others who “look and act normal” and sometimes
to God. You may feel angry and resentful towards people who push you to
accept Dystonia on their “term limits”. You’re asked to “live with it”. At
times you may simply direct your anger at the word DYSTONIA. Reading about
the disorder and hearing the word DYSTONIA may simply intensify your
feelings.
Eventually anger will be expressed in some way. It is not easy to admit to
feeling angry at a disease that is not prevalent among society. Everyone who
deals with Dystonia on a daily basis feels angry. It is important to
recognize this. Nor should you feel embarrassed about this. Severe
depression, hostility, and overall bitterness can develop if you do not find
safe ways to express your anger. It is not wise to “bottle it up”. Punch a
pillow! Scream if you must! Talk with someone. Let others know about your
feelings.
CONFUSION:
This is the “I can’t think straight” emotion. For some it usually
intensifies during treatment plan changes. Making simple decisions may seem
impossible. It may be difficult to concentrate and follow through on plans.
You may feel disorganized or “error-prone”. Often people feel
impatient with themselves and others. Low motivation levels may occur
because you feel unsure about your decision-making abilities. You may not
feel as confident about yourself as an individual.
WHY? WHY ME?:
Without a doubt this is the most difficult emotion one has to face
particularly if treatment options have limited success. There will be days
when you arrive at your health-care provider’s office with only this
question. The “why” question is often repeatedly asked in an effort to make
sense of the disease and loss (loss of security, self-image, self-worth,
physical abilities and control). Sometimes the “why” question is not really
a question, but a cry for help. Unfortunately there are not always easy
answers to “why” questions. We still need to learn a lot more about
Dystonia. We’ve only just begun to answer some of the basic “why” questions
that pertain to Dystonia.
EXPECTATIONS:
You may expect too much of yourself. You may want to handle Dystonia “better
and quicker”. You may think that you are not meeting your own set standards
of yourself. You want to “get on with things” even though the physical
aspects of Dystonia may get in the way. The expectations of others may only
add to your burdens. It is very helpful not to have a set timetable of your
feelings. A more realistic approach is “to take things one day at a time”.
Easier said than done at times. Let your true feelings guide you, rather
than trying to meet other people’s standards. Try not to judge yourself too
hard. By doing so, you limit possibilities and create a reality that you
won’t be able to live with.
PREOCCUPATION:
Dystonia, the disease and its symptoms, may dominate your thoughts on a
daily basis. You may be preoccupied with symptoms when you’re at work,
at school, at home etc. Even when you’re washing the dishes! Dystonia may
be- come the focus of all your conversations. The intensity of this
preoccupation usually lessens with time as you learn more about yourself and
your Dystonia. Learn to “live with Dystonia, not for it”.
GUILT:
You may be tortured by the “what ifs” and “if onlys”. You may blame yourself
for "bringing on Dystonia” and “passing it on to others” such as your
children. These feelings are normal although not always realistic. Heredity
factors cannot be changed. Guilt can easily eat away at you if you allow it
to do so. With time you will come to understand that it is “not your fault”
for “getting” Dystonia.
BITTERNESS:
This emotion is similar to anger. Anger and feelings of bitterness may
actually overlap with one another. Bitterness can drain you of valuable
energy that can be utilized elsewhere in your life. If these feelings are
left unattended, coping with Dystonia may become “blocked”. You begin to
fall behind rather than move ahead.
ENVY:
This feelings crop up when you see others performing tasks and activities
that you were able to perform equally well if not better prior to your
diagnosis. You may feel jealous of other people. Self-pity may also present
itself.
IN-LIMBO:
This is the “in-between” point between the reality of Dystonia and the point
where living life seems worthwhile even with Dystonia. You appreciate who
you are as a person. You finally begin feeling better about yourself and
others. Your outlook towards life and Dystonia may change and move into new
and diverse directions.
REALITY:
This is the “it’s true I have Dystonia” phase. The full impact of the
disease and its effects hits you. Sometimes like a “ton of bricks”. At this
point you realize that the disease is not going to go away. It’s here to
stay. Life will no longer be the same. You may experience unexpected bouts
of crying and sobbing. It is very important to release these pent-up
emotions during this time.
STRUGGLE
WITH NEW LIFE PATTERNS:
Here you will recognize that you have a choice: to live with Dystonia or not
live with it. Your CHOICE. You begin to rebuild a new life that incorporates
Dystonia. It will be different. But you will reinvest in work, activities,
family, friends, and LIFE. Once again, not everyone with Dystonia struggles
with new life patterns. For many, “life goes on as usual”.
LIFE IS WORTH LIVING:
With these positive emotions you accept yourself as a person who just also
happens to be one with Dystonia. New options and possibilities will exist
for you. Some options may be ones that you never dreamed were
possible. You may find that you no longer are the same person that you were
before Dystonia came along. Often people become stronger, wiser, more
compassionate, and aware of the struggles of others in similar situations.
For some individuals with Dystonia, learning to cope with Dystonia on a
daily basis...
.....is not difficult...
.....do not experience all of the above emotions....
.....does not occur overnight....
.....takes time....
.....teaches one to take a new lease on life......
.....to reevaluate old and new beliefs.....
.....to change goals and seek new ones......
.....to develop a new philosophy on life....
.....to find meaning in life.....
.....and to move ahead...
......even with Dystonia.
You can read about coping with Dystonia in the book I'm Moving Two
by Beka Serdans, RN.
Check out more here!
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