Workshop – Coping with Dystonia
Drs. Urs and Corinna Rogger
Urs Rogger and his
wife Corinna are active members of the Schweizerischen Dystonie-Gesellschaft,
as Urs has torticollis. They both
studied medicine and specialised in psychiatry.
Urs presently works as a psychiatrist at the
Coping with
Dystonia
(by Urs and
Corinna Rogger)
Coping, of course, is what we all are doing
continously. Coping with a chronic illness is what all of you are experts at.
My wife/husband and I have merely tried to give you some theoretical background.
We think that it will prove most interesting and rewarding to share our
experiences.
I want to begin with a poem by Paul Scarron, a French writer of the 17th
century, who suffered from generalized dystonia
Mon pauvre corps est raccourci
Et j`ai la tête sur l`oreille
Mais cela sied à merveille
Et parmi les torticollis
Je passe pour des plus jolis
My poor body is shortened
And I have my head on my ear
But it suits me marvellously
And among the stiff-necked
I pass for one the prettiest
(Cited by Lees A.J. - Tics
and related disorders.
On the one hand, this poem is a short
description of a form of dystonia, on the other hand it shows a form of coping.
In other words the suffering is expressed in a poem, which tries to reframe the
experience of illness in a humorous and
self-assertive manner.
My lecture is subdivided into the following subjects:
1. A definition of coping
2. Problems a person suffering from dystonia
has to cope with.
Personal
(Medical, Psychological etc.)
Social
environment (Family, Friends, etc).
3. Coping Styles of Patients and their
respective Families
3.1. The process of adaptation after losing
your health
3.2. An overview of helpful Coping Styles
3.3. Applying Beck`s
cognitive therapy model to psychological
problems in dystonia.
3.4. How do families with chronical illness
cope?
4. Experience of patients with dystonia and
their families with different coping strategies
To cope: deal competently with situation or problem.
(German: fertig werden mit/
Medieval Latin: colpus: blow)
To cope well or badly: implying you can use
strategies which work well for your problem or which may make matters worse. The English expression “to cope” has become a
technical term in psychology.
Scientific definition (according to Lazarus):
Constantly changing cognitive and behavioral efforts to manage specific external
and/or internal demands that are appraised as taxing or exceeding the resources
of the person.
Dystonia may mean losing:
(Fitzgerald, 2000)
Chronic illness does go along with more or less
intense grief/mourning.
Often there is a regular pattern showing the
following stages:
(after DSM IV, APA, Washington 1995)
High
adaptive level.
This level of defensive functioning results in optimal adaptation in the
handling of stressors. These defences usually
maximize gratification and allow the conscious awareness of feelings, ideas,
and their consequences. They also promote an optimum balance among conflicting
motives. Examples of defences at this level are:
Glossary of Specific Defence Mechanisms and
Coping Styles
affiliation The individual deals with emotional
conflict or internal or external stressors by turning to others for help or
support. This involves sharing problems with others but does not imply trying
to make someone else responsible for them.
altruism The individual deals with emotional conflict
or internal or external stressors by dedication to meeting the needs of others.
Unlike the self-sacrifice sometimes characteristic of reaction formation, the
individual receives gratification either vicariously or from the response of
others.
anticipation The individual deals with emotional conflict
or internal or external stressors by
experiencing emotional reactions in advance of, or anticipating consequences
of, possible future events and considering realistic, alternative responses or
solutions.
humour The individual deals with emotional conflict
or external stressors by emphasizing the
amusing or ironic aspects of the conflict or stressor.
self-assertion The individual deals with emotional conflict
or stressors by expressing his or her feelings and thoughts directly in a way
that is not coercive or manipulative.
self-observation The individual deals with emotional conflict
or stressors by reflecting on his or her own thoughts, feelings, motivation,
and behaviour, and responding appropriately.
sublimation The individual deals with emotional conflict
or internal or external stressors by
channelling potentially maladaptive feelings or
impulses into socially acceptable behaviour (e.g., contact sports to channel
angry impulses).
suppression The individual deals with emotional conflict
or internal or external stressors by
intentionally avoiding thinking about disturbing problems, wishes, feelings, or
experiences.
Up to 80 % of patients with dystonia are
suffering from depression because of their illness. Beck develops a list of
several cognitive errors of depressive patients. Cognitive errors means a form
of beliefs This form of thinking can be encountered in the case of chronic
illness like dystonia.
See the following chart 1.
Families and parents of patients with dystonia
want to know why the illness occurred and what is at fault. Commonly associated
with this search for blame are feelings of guilt. In trying to understand the
illness, families may blame each other, bad genes, environmental events, or the
medical system. Healthy family members may experience guilt about being healthy
or feel angry towards the patient.
Most important for families with chronic illness
is maintaining communication. If need be, family counselling can be helpful.
Each family member has his or her own story of
the illness. Discussing these stories together results in a special family
story of the illness.
Hearing and appreciating the story of the other
members of the family may have multiple benefits (adapted from S.H. McDaniel et
al. 1992):
- Children and adolescents often feel guilty
about the illness of a member of the family. In communicating, family members can reassure one another and diminish
blame.
- Listening to each other promotes empathy
within the family.
- Discussing each other`s adaptations to dystonia
highlights individual differences about dealing with the illness. Where there is undertstanding
of expectable individual differences, family
members are not misunderstood as being withdrawn or inconsiderate.
- Maintaining communication assists families
throughout the inevitable periods of uncertainty.
- Family members often feel that they are defined
more by an illness than by other family goals. Communicating with each other their needs and wishes can help to
redefine the family identity.
- Patterns of response to illness are often
influenced by family history developed across generations. Susan McDaniel (et
al. 1990) suggests that beliefs and expectations about illness in the family
can be identified with an illness-oriented
family tree. This is how families can express their experience with illness by
identifying sick members and their disease, finding out how caregiving was
provided and to what effect. This means helpful
and unsuitable strategies can be identified.
- Families with chronic illness often feel isolated
from resources and from other families also
coping with the illness. Through self-help groups,
families benefit from receiving information about the illness and possible
coping strategies. The support groups, family associations for specific
disease, books (also with Internet addresses) and the Internet may provide more
information.
- Remind the family of how well they are
functioning.
I have spoken about communication in the
family. To show you the principles of communication. I am going to summarize a
paper by H. Uttenreuther and R. Wagner, which was published in the Mitteilungsblatt
der Schweizerischen Dystonie-Gesellschaft (Nr. 13, Winter 2002/03):
The basics of a sound relationship between the
couple or family members are (and this holds true for all families with or
without chronic illness):
- No member of the family should feel at a disadvantage
or unfairly treated.
- Even if we think, that we know the answer in
advance, it is very important to ask your partner and your children. Ask the
members of your family, what their needs are. When arguing begin with “I”,
like: I feel…, I mean…; avoid phrases like: You are….
- It is often helpful to ritualize the conversation.
This means 1. weekly sessions where events are summed up (the sessions must
last no longer than 30 minutes) and stress is laid on changes for the better.
2. Whatever was disturbing to any of the parties is discussed. This ensures a matter-of-fact approach with
regard to mutual problems.
- There have to be respect, individuality and a
certain amount of personal freedom within a couple or family. This point needs
stressing when one of the partners is chronically ill.
I close this lecture with another poem. It is by Rebecca Serdans, who worked as an intensive care unit registered nurse before she
suffered from a spasmodic torticollis. In
her poem she gives a detailed account of the beginning of her illness and her
way to live with it.
Dystonia is…
I have lost yet I have gained.
I am stronger.
I am wiser.
I am more compassionate.
I am aware of the struggles of others.
I have evaluated old beliefes.
And developed new ones.
I have changed goals and sought new ones.
My philosophy of life has changed.
For the better.
I have found the meaning of life.
I have moved ahead.
Even with dystonia.
We all can.
We all must.
Even with dystonia.
(Dystonia is…, a personal poem written by Rebecca
Serdans. P. 107/8)