Losing Face: The
Personal and Social Impact of Scleroderma-Related Facial Changes,
Part 3
by Sharon Wood,
Psy.D. (originally published in Scleroderma Voice,
2002 #4)
... It can be
said that our understanding of a mechanism is often crude
and incomplete until it breaks down and we try to repair it.
Breakdown and repair of interaction is what many of the visibly
handicapped experience constantly in their lives. In studying
this with them we are also studying much about ourselves of
which we were heretofore unaware. (Davis, 1964, p. 135)
As noted in the first
two articles of this series on the personal and social impact
of scleroderma-related facial changes, systemic scleroderma
and linear scleroderma en coup de sabre produce, to
one degree or another, visible effects on one’s facial
appearance.
Thus, in addition
to coping with the effects of the illness itself, individuals
with these particular types of scleroderma must cope with
the personal (including physical, functional, and emotional),
interpersonal and social impact of these facial changes as
well.
Unlike other parts
of the body that may be covered or concealed when there is
an obvious effect from an illness or accident, it is difficult,
if not impossible, to hide the effects of scleroderma-related
facial changes if one would choose to do so.
Given this fact,
those of us with scleroderma-related facial changes are forced,
in one way or another, to grapple with this challenge; and
so too, are the significant and generalized others in our
lives. As Davis observes in the passage above, we are truly
all in this together, “studying” much about ourselves
and each other in the process.
What Have We Learned?
And just what have
we learned from our “studies?” This author’s
personal and professional experience with scleroderma-related
facial changes and results from the dissertation study upon
which these articles are drawn, suggest that the vast majority
of us feel considerably uncomfortable and awkward addressing
this issue, thus leading to two basic behavioral responses:
avoidance and isolation.
In essence, most
of us are disinclined to broach this topic to any great extent
or degree, and when we do, we are, for the most part, wrestling
with it alone.
Pretending there
is no “elephant in the middle of the living room”
will not make the issue go away. Approaching this issue in
a superficial and solitary manner will not “make the
grade.” Scleroderma-related facial changes are a decidedly
intra- and interpersonal issue; they beg to be acknowledged
and explored from every angle and dimension and they beg to
be addressed in a public forum when those of us who are ready
to do so choose to begin the dialogue.
So where do we begin?
If we, as “students,”
are ready to explore this issue, this author would suggest
we start by taking the following three steps.
First, readers are
encouraged to read and/or review the two preceding articles
of this series which appeared in the second and third issues
of the 2002 Scleroderma Voice. This review would provide
readers with an understanding and appreciation of what has
brought us to this particular point in our process. Incidentally,
if there is someone whom you would like to invite to join
you in this endeavor, the author suggests that they read all
three articles as well.
Second, readers are
invited to participate in the “Losing Face” reflective
exercise in the next section of this article. The objective
of this exercise is to provide readers with an opportunity
to explore myriad affective, cognitive, and behavioral experiences
surrounding scleroderma-related facial changes.
Third and finally,
readers are encouraged to consider, reflect upon, and take
action in whatever way and to whatever extent you feel comfortable,
with the recommendations following the reflective exercise.
“Losing Face”
Reflective Exercise
The invitation to
engage in this reflective exercise is extended to those who
have scleroderma-related facial changes as well as those who
are in a relationship with someone who has these changes.
The latter would include significant others as well as health
care professionals.
Incidentally, this reflective exercise is not recommended
for children or for any adult who may be going through a particularly
difficult time emotionally, especially regarding their illness
and facial change process.
If you have accepted
this invitation, however, it is important that you are in
a “safe place” to engage in this exercise. A “safe
place” is defined as a place in which you are able to:
1) tolerate potentially
strong feelings;
2) take as much time as you need;
3) allow for uninterrupted space; and
4) identify and contact, if need be, someone with whom you
can talk with about this experience (i.e. a family member,
friend, support group leader or fellow participant, counselor,
etc.).
It is absolutely
critical that you are in a “safe place” to participate
in this reflective exercise, and that you are honest with
yourself about your readiness to do so.
The only way you
can “fail” this part of the curriculum is if you
have not taken the necessary steps to establish a safe place,
you have demanded from yourself a performance you are not
yet ready to give, or you have judged yourself for needing
more time to warm up to the idea of facing an issue that may
be particularly challenging for you.
If you have determined,
for whatever reason, that now is not the time for you to participate
in this activity, give yourself credit for your honest assessment.
If you have made
this assessment, the author suggests that you “turn
the page,” go directly to the “Recommendations”
section below, and return to this reflective exercise at a
better time.
For those who have
made the decision to participate in this reflective exercise,
please consider the following four suggestions before you
begin:
Spend No More
Than 10 Minutes the First Time
It is suggested that
you spend no more than 10 minutes with this exercise the first
time you participate in this experience. You may wish to extend
the time on subsequent reflections, but it is important to
monitor and honor your emotional state each time you engage
in this exercise. There certainly will be times when you will
be more receptive to this activity than others.
Close Your Eyes
During This Exercise
For the better part
of this activity, you will be asked to close your eyes. Therefore,
it is suggested that you read through the instructions first,
memorize the steps, and then begin again.
Stop If You Feel
It Is Too Much
If, after beginning
the exercise or at any point during this process, you begin
to feel overwhelmed or anxious, it is suggested that you stop
the exercise, open your eyes, breathe deeply, and ask yourself
the following question: Would there be a more appropriate
time to engage in this exercise and, if not, do I need to
work with a trained paraprofessional or professional counselor
regarding this issue?
As noted earlier,
it is important to honor how you feel at the moment and act
accordingly. If your feelings are too strong, then you are
advised to wait until these feelings are less intense and
you feel safe to explore them in this exercise or with a “supportive
other.”
Record Your Feelings
It is suggested that
you record your experiences with this process in what this
author refers to as the “mourning papers.”
The “mourning
papers” is a vehicle to record your grief process concerning
your “loss of face.”
After each reflective
exercise, spend a few minutes recording your experiences in
a “stream of consciousness” fashion. Without judging
your feelings, write whatever comes to mind.
Depending on preference,
comfort, and availability, a pen and notepad/ journal, tape
recorder, or computer may be used for the “mourning
papers.”
Losing Face Reflective
Exercise Instructions
Establish a “safe
place.”
Have a pen and notepad/journal,
tape recorder, or computer within arm’s reach.
Find a comfortable
position.
Close your eyes.
Take several deep
breaths and continue to breathe slowly throughout the exercise.
Sit in silence for
a few moments to allow yourself to be fully present for this
experience.
When you are ready,
begin to reflect on your experience with scleroderma-related
facial changes. “Reflect” is defined as observing,
without judging, your feelings, thoughts, and behaviors around
this experience.
There are many directions
you can take with respect to this reflection. For example,
remember back to the time when you first noticed the facial
changes occurring for you, or, if you are in relationship
with someone who has these changes, remember back to the time
when you first noticed these changes occurring for her or
him.
What feelings came
up for you?
What did you think
about the facial changes?
How did you respond
to these facial changes?
Were you aware that
these changes would be a consequence of the illness or did
they take you entirely by surprise? If you were aware that
facial changes would accompany this illness, how did you become
aware of this fact?
When you have finished
your reflections, sit for a few more moments with your eyes
closed and visualize yourself in one of your favorite places.
Experience this place with all your senses. For example, what
colors, sounds, tastes, and smells are present? If you wish
to visualize touching something, how does it feel? And so
forth.
When you have fully
explored this place, slowly open your eyes and return to the
room.
Record your experiences
in the “mourning papers.”
Close your reflective
experience in whatever fashion you choose. This closing could
take the form of a blessing, a chant, music, a stretching
exercise, reading inspirational passages from a favorite book,
etc.
When you feel comfortable
doing so, share your experience(s) with someone you trust
who is capable of appreciating your experience. Choosing the
right person for this conversation is as important as choosing
the right time to engage in this exercise.
Recommendations
As noted earlier,
these recommendations are based on the author’s personal,
educational, and professional experiences with scleroderma-related
facial changes.
The author is aware
that these recommendations may not apply to everyone’s
experience nor necessarily hold true under all circumstances.
Thus, each person should decide for her or himself whether
these recommendations are relevant to her or his own experience
and whether they should be taken at face value or taken in
stride.
Grieving Is an
Essential Part of the Process
First, with respect
to these recommendations, it is imperative that we acknowledge
and grieve our “loss of face.”
As noted throughout
this series of articles, those of us with scleroderma-related
facial changes incur losses not only on a physical level that
result in pain, functional impairments, and appearance and
aesthetic concerns, but on intrapsychic, interpersonal, and
social levels as well.
Although the manner
and manifestation of scleroderma-related facial changes vary
from person to person, there is an underlying process of trauma
and loss involved in this experience, which can include accompanying
challenges to one’s identity, assumptions, and belief
and meaning systems; and thus, we need to appreciate and approach
this process accordingly.
There are a number
of books that address these issues; for “starters”
this author recommend the books by Bolen, Duff, and Chodron
listed at the end of this article. For a book that explores
the life of a young woman with a face disfigured by cancer,
this author also recommends Autobiography of a Face,
by Lucy Grealy. Many readers will undoubtedly identify with
many of the challenges that Grealy experienced, living with
a face different from others.
Health Care Professionals
Could Benefit from Training in These Issues
Second, this author
recommends that health care professionals, including physicians,
nurses, dentists, psychotherapists, and physical, speech and
occupational therapists, and so forth, participate in a training
about scleroderma-related facial changes.
This training could
help these professionals understand what is occurring for
many patients in regard to the physiological facial change
process and the psychosocial issues surrounding the “loss
of face,” including an overview of clinicopathological
consequences, functional problems, disabilities, treatments,
and facial exercise program, as well as the psychological
and social impact of these changes.
This training would
also be an opportunity for health care professionals to share
their respective clinical experiences with each other, and
to exchange resources and referrals for patients with scleroderma-related
facial changes.
With respect to the
doctor-patient relationship in particular, one of the most
significant findings of this author’s dissertation study
revealed that many of the participants’ doctors either
had not initiated a conversation about nor addressed the issue
of scleroderma-related facial changes with their patients;
and of those doctors who had addressed this issue with their
patients, only a small minority addressed it to the satisfaction
of the participants.
Doctors cannot predict
the precise manner and manifestation of these facial changes
for their patients. But it is this author’s opinion
that patients need to be as informed about scleroderma-related
facial changes as they need to be informed about the effect
scleroderma may have on their hands or organs, although every
patient’s individual differences need to be respected,
and the timing, delivery, and content of the “message”
need to be taken into consideration for this conversation.
There is no question
that this illness-related consequence is a potentially “loaded”
issue, particularly for female patients living in our society—a
society that values health and beauty, particularly facial
beauty, above other more enduring and endearing qualities.
However, the impact
of not knowing or being totally unprepared and surprised by
their facial change process has the potential of being far
more devastating in the long run. When this author asked several
of the participants how they would have preferred that their
doctor address the issue of their facial changes with them,
all of them said that they would have appreciated their doctors
being honest and forthright with them about these changes.
One of the study
participants explains her preference:
Debbie: I think
[the doctor] asked me if I knew [scleroderma] would be in
my face. And I said, “No, I didn’t know.”
She said, “Well, what you have in your arms, what
you have in your breast, is now in your face.” She
was real sweet about it, but she was also very blunt. I
mean she was very honest with me, which I appreciate.
Social Skills
Training (SST) for Those with Facial Changes
Third, this author
recommends that we give serious consideration to exploring
how social skills training (SST) could be of assistance to
those of us with scleroderma-related facial changes.
Social skills training
is defined by Wilkinson and Canter (as cited in Partridge,
1998) “as enabling people who have disfigurements to
develop an understanding of what goes on in social interactions
and to practice effective strategies for managing these encounters
more successfully” (p. 176).
Anyone with marked
facial changes would undoubtedly testify that many social
interactions are awkward and uncomfortable, and in many cases
painful, because the parties involved become distracted and
preoccupied by the facial changes to the detriment of a “typical”
interaction.
This author recommends
a specific social skills training model for those of us with
scleroderma-related facial changes. This model has been developed
by the researchers at Changing Faces, a foundation in England
dedicated to helping individuals with facial disfigurements.
The professionals
at Changing Faces believe that the person with the disfigurement
or facial changes can significantly influence public reception
by the way she behaves, being proactive in social situations
instead of reacting to others’ concern or embarrassment,
and developing good communication skills. For a description
of this specific model, see the article by Partridge listed
in this article’s reference section.
We Must Start
a Dialogue About Scleroderma-Related Facial Changes
Fourth and finally,
it is critical that we begin to wholeheartedly engage in a
dialogue about scleroderma-related facial changes, both on
personal and interpersonal levels.
Participating in
such a dialogue is important for two reasons:
(a) In general, this
author has found repeatedly that there is a “shroud
of silence” veiling this issue in our lives. This silence,
to say the least, is costing us dearly as individuals, as
couples, as families, as communities, and as a society. Our
personal and social health is being severely compromised and
we can ill afford to remain silent and solitary, especially
when it is within our power to change the status quo.
(b) We are wasting
a tremendous amount of intra- and interpsychic energy trying
not to talk about it. Imagine what we could accomplish with
this energy once we decided to dialogue.
In Fact, the Dialogue
Has Already Begun
Perhaps the most
important consideration this author would like to leave with
readers is that we are not alone, nor are we “starting
from scratch” with this dialogue.
Some of us are already
part of the vanguard to lift this veil of silence. There are
the 13 women who participated in this author’s study,
and the various support groups and the Scleroderma Foundation’s
Southern California Chapter that helped to recruit these participants
and offer workshops on scleroderma-related facial changes
at their meetings and education days.
The Scleroderma Foundation’s
appreciation and conviction for lifting this veil is revealed
in their willingness to publish this series of articles and
to offer workshops at conferences and support group leader
trainings.
This author believes
there are many more of us working on this issue in our daily
lives. With just a little more time and effort, we should
soon reach the “tipping point” and the inner and
outer dialogue can begin in earnest.
However, this author
need only reflect on her own personal experience and that
of the participants in her study and various Scleroderma Foundation
workshops to recognize there are times when one is not ready
to engage in such a dialogue. There is something to be said
for respecting one another’s process.
But those of us ready
to begin a dialogue about our facial changes must find safe
places and supportive others to explore this issue with us.
For those of us not
yet ready to explore this issue, we need to be given the space
to wait.
And for all of us,
grant us the wisdom to know, appreciate, and honor the difference.
References*
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*References from
all three articles are included in this list. This author
would like to express her deep appreciation to Lyn Scott,
LCSW, for her unwavering support for and editorial review
of these articles.
Go
to Part 1 of "Losing Face."
Go to Part 2 of "Losing
Face." |
