Losing Face: The
Personal and Social Impact of Scleroderma-Related Facial Changes,
Part 2
by Sharon Wood,
Psy.D. (originally published in "Scleroderma Voice,"
2002 #3)
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A disfigurement
of any part of the body is accompanied by emotional distress,
but nowhere do we encounter the intensity or complexity of
feelings which occurs when the involved area is the face.
(Nordlicht, 1979, p. 1382).
Although
scleroderma-related facial changes may not be considered a
“disfigurement” as such, the feelings that arise
in response to these changes can be as intense and complex
as those referenced in the passage above. This was the case
with the 12 women I interviewed as part of the research for
my doctoral dissertation. This was and is the case in my own
experience with scleroderma-related facial changes. And this
may very well be the case for anyone living with this particular
type of facial change.
As with any intense
emotions, especially those that are distressing, if they are
ignored or denied they will compromise and diminish the quality
of one’s life. It is this author’s hope that by
sharing the participants’ stories with my readers, those
of us with scleroderma-related facial changes will gain a
greater understanding for and appreciation of our own experiences;
thereby increasing our sense of emotional health and personal
and relational well-being.
In this article,
the second in a three part series (the first article appeared
in the last issue of Scleroderma Voice, 2002, Issue No. 2),
we will continue to explore the physical and functional ramifications
of scleroderma-related facial changes for the 12 participants.
However, the better
part of this article will focus on the participants’
intrapsychic and interpersonal experiences of what this author
has identified as the process of “losing face.”
Functional
Ramifications of Scleroderma-Related Facial Changes
At the conclusion of the first article, this author noted
that the vast majority of functional problems reported by
the participants were due to the effects of microstomia.
Microstomia or
“small mouth” is one of the symptoms of systemic
scleroderma. Eleven of the twelve participants reported functional
problems as a result of microstomia, and all of the participants
with microstomia reported difficulty with eating. Lynne and
Laura testify to this particular difficulty:
Lynne:
I can’t stick my tongue out. I can’t wipe the
front of my teeth with my tongue so I have to clean them
off ... and that is one of my biggest pet peeves. I am constantly
checking my teeth and wiping my teeth now. And when I eat,
I won’t eat in front of anyone except my husband and
my best friends, because I am always getting food—when
you can just normally suck the food out of your teeth (with
your tongue), I can’t.
Laura:
I have difficulty chewing properly. And all those things
fit together make me feel uncomfortable eating out with
people.
Of the 11 women
with microstomia, 8 of them reported speech difficulties as
a result of scleroderma-related facial changes. These problems
included mumbling, slurring, and mispronouncing letters and
words, an experience noted in passages from Helen and Millie’s
interviews below:
Helen:
Because of my mouth being so tight, I feel like I don’t
speak properly. People don’t understand what I’m
saying because I sound muffled sometimes. And sometimes
my husband will say that I’m sounding muffled, and
he didn’t understand what I said ... my mouth opening
is smaller, and so my words don’t always come out
the way I want them to come out. I know what I said, but
sometimes people don’t know what I said, or they misunderstand
something I said.
Millie:
I kind of mumble because I really don’t want to use
my mouth.... It’s so uncomfortable to try and open
it and really make my words more rounded and speak properly.
So it aggravates me when (my husband) doesn’t hear
me and I have to repeat it. I have to force myself to talk,
like I said, with more rounded (words). It’s just
very uncomfortable ... it could also be my tongue because
I sometimes find that it doesn’t go where I want it
to go. And I’ll bite it or something when I’m
eating or when I’m speaking. I slur some of my words
because the tongue isn’t forming the word properly.
Microstomia may
also interfere with a patient’s dental care. Nine of
the participants reported such problems as an increase in
tooth decay, difficulty brushing their teeth and wearing dentures
or partials, and excruciatingly painful experiences during
their visits to the dental office. The latter was problematic
for some because dentists and their staff had not been trained
in treating patients with scleroderma-related facial changes.
One participant reported that she decided to talk with her
dentist and his staff about the effects of microstomia; on
subsequent visits, both staff and patient had a more positive
experience. Another participant reported that her dental visits
were less painful and more productive because her dentist
took into account her smaller mouth size, using tools and
items ordinarily reserved for his work with children when
he performed examinations and procedures with her.
With respect to
the impact of microstomia in the areas of affection and sexuality,
4 of the 12 participants reported various relational strains
as a result of this symptom, as Kara and Fran’s testimonies
reveal:
Kara:
I can’t close my mouth, it doesn’t shut completely.
The lips don’t close. And I noticed things like I
can’t pucker to kiss someone.... It’s kind of
a half-hearted sort of a kiss, and that was kind of ...
when that started happening too, that really upset me....
I couldn’t kiss my kids. And I’m married, and
it didn’t bother me that I couldn’t kiss my
husband (cries), as much as my kids. I never cried over
it before.
Fran: And my husband would say to me (before we realized
the facial changes were happening), “Why are you so
tight-lipped? Limber your lips up!” when we would
kiss. And I was like, I’m not tight-lipped, I’m
relaxed!”
It is important
to note that the functional changes and losses experienced
by the participants contributed to social and relational “side-effects”
as well. Activities of daily living such as eating, speaking,
and acts of affection and sexuality are, by nature, interactional.
It is evident from the various passages above that scleroderma-related
facial changes compromised both the functional and interpersonal
aspects of the participants’ lives. As a result, the
quality of their lives in general, and their interactional
experiences in particular, were similarly compromised.
As we shift from
exploring the effects of the physical and functional impact
of scleroderma-related facial changes into the intrapsychic
and interpersonal realms, it is important to ascertain just
what was lost for the participants as a result of their facial
changes. To consider the essence of this loss, we need to
return once again to a question that was posed in the first
article: “What happens when an individual ‘loses
face,’ both literally and figuratively?” From
a literal standpoint, a loss of face means that a woman with
scleroderma-related facial changes may lose the physical appearance
and integrity of her face, both in structure and in function.
She may also lose the capacity to express herself (e.g. mood,
affect), in former and familiar ways. And, as later will become
apparent, a woman with scleroderma-related facial changes
may lose the capacity to “recognize” herself,
and the capacity of others to recognize her.
In order to ascertain
what it means to lose face on a figurative level, this author
offers the perspective of Frances Cooke Macgregor, a pioneer
in the study of facial disfigurement who has written about
this topic for over 50 years. Macgregor contends that the
face “is the person (her)self” (1951, p. 630)
and “is closely tied to the core of the self and the
sense of identity” (1974, p. 139); quite simply, Macgregor
asserts that the face “is the symbol of or synonymous
with the person” (1990, p. 250). Thus, what may be lost
on this level for a woman with scleroderma-related facial
changes may be that aspect of herself or identity that is
connected to her feelings about and perceptions of herself
and the world around her.
The intrapsychic
and interpersonal losses incurred by scleroderma-related facial
changes may manifest in a variety of ways. For example, a
woman’s self-concept, self-esteem, and body-image may
be negatively altered as a result of these changes (e.g.,
the vast majority of participants reported that all three
of these aspects were negatively altered at some point, if
not throughout their facial change process). She may experience
varying degrees of change in her personality (e.g., prior
to these changes many of the participants reported being outgoing
and sociable; as a result of these changes they reported becoming
shy and withdrawn); her lifestyle (e.g., several participants
reported changing their career plans or actual jobs as a result
of their facial changes, and many of the participants reported
that they no longer were able or willing to participate in
various avocational pursuits); and her marital relationship
(i.e., many of the participants reported that their facial
changes caused discomfort and distress in their relationships
with their husbands and several reported that the changes
had contributed to the deterioration or demise of their marriage).
Several of the women in the study felt that their quality
of life had become so compromised and their experience of
loss so overwhelming, they had contemplated suicide.
From an emotional
standpoint, a woman with scleroderma-related facial changes
may experience a host of emotions that wax and wane over the
course of her facial change process. These emotions may include
shock, denial, dissonance, anger, anxiety, fear, bitterness,
grief, depression, and hopelessness, as well as emotions that
arise in response to the perceived reaction of others to her,
including self-consciousness, embarrassment and shame. She
may also feel stigmatized, ostracized and shunned. It is this
author’s belief, based on an analysis of the interview
data and my own personal experience with scleroderma-related
facial changes, that Macgregor’s contention (i.e., that
the face and the person are essentially one and the same,
and thus, when one is significantly altered, so too is the
other), is valid for most, if not all women with this type
of facial change. In essence, the literal and figurative losses
may be a traumatic experience for a woman going through the
process of scleroderma-related facial changes; she may experience
a profound shift in all levels and aspects of her being, from
the most superficial to those which reside at her very core.
The
Process of Losing Face
In the process of recording and analyzing the participants’
intrapsychic and interpersonal experiences of scleroderma-related
facial changes, this author became aware of a dynamic pattern
emerging. This dynamic pattern is what subsequently became
identified as the process of “losing face.” The
process of losing face involves four basic phases which permeate
this process but are weighted at particular points along a
continuum. These four phases include:
- awareness threshold;
- identity dissonance;
- resistance and denial; and
- reorganization and integration.
As is true with
the five stages of grief (Kubler-Ross, 1969), this process
does not unfold in a true linear fashion; the direction and
pace of movement varies throughout this process. Although
each participant’s experience of losing face was highly
subjective and unique, there were some fundamental similarities
among the participants as they moved through this process.
Presented below
are descriptions of the four phases of this process of losing
face and the various elements contained therein.
Phase I: Awareness
Threshold
A woman reaches awareness threshold when she realizes that
the facial changes are occurring to her in the context of
her illness. Reaching awareness threshold is comprised of
two events:
- a woman must become visually aware of these changes for
herself; and
- the facial changes must be identified/labeled.
A woman can become
aware of these changes by seeing them in an object that provides
a clear reflection of her face (e.g. in a mirror, a photograph,
or on videotape). Identifying/labeling occurs in one of several
ways for a woman with scleroderma-related facial changes:
- a doctor may inform her about these changes;
- she may read about these changes in scientific, popular,
or scleroderma-related literature, or on the Internet; or
- she may see another patient who has these facial changes.
There are two
reasons it may be difficult for a woman to gain awareness
of her facial changes. One, in the early stages of the facial
change process, these changes mimic other change processes
unrelated to scleroderma (e.g. purposeful weight loss, gaining
muscle tone). Two, the gradual and insidious nature of these
changes make it virtually impossible to perceive the advent
of these changes. Unlike a sudden change in facial appearance
due to an accident or injury, it generally takes an accumulation
of changes to occur over time before a woman becomes aware
of their presence. Sara’s testimony below aptly captures
this experience:
Sara:
I’d look in the mirror. I’d keep running to
look in the mirror all the time to see what—well,
then I’d go, “Well, okay, it don’t look
that bad.” I mean something’s going on, but
I don’t know what. But I still looked like Sara, okay?
And then one morning I woke up and I went into the bathroom
and I almost had a heart attack. It seemed like my face
changed overnight.... Like the shape of my face, and my
eyes and my looks.... It seemed that it all just kind of
blended into one (new) face.
Phase II: Identity
Dissonance
The second phase in the process of losing face is identity
dissonance. Identity dissonance is a feeling that occurs for
a woman when she is unable to assimilate the facial changes
into her overall identity; what Rosenberg (1979) calls the
self-concept or self-picture. The self-picture is the concept
a woman has of herself; it is the attitudes and perceptions
she has of herself which has the function of directing or
influencing her behavior. The self-picture is a central organizing
principle around which all of the various identity systems
revolve.
When a woman is
unable to assimilate the facial changes into her self-concept
or self-picture, the resulting identity dissonance is experienced
as feelings of extreme distress – she feels disoriented
and disconnected from herself, and she is unable to recognize
this new image as herself. In essence, her sense of knowing
and being known has dissolved, and she may very well feel
like a stranger in a strange land. As is true with awareness
threshold, the participants in this study had various ways
of relating this experience of identity dissonance. For example,
Kara reported that when she looked into the mirror she thought,
“I don’t think the person that I’m looking
at is me.” Another participant, Laura, remarked, “To
me, I almost don’t know who that person is because of
the face. You feel like a stranger to yourself.” Looking
in a mirror once, Terri asked, “Who is that person?”
She reported that this experience made her feel “lost.”
She elaborated by saying, “It wasn’t me anymore;
it was another person.”
Not only is a
participant’s sense of “knowing” compromised
as a result of her experience with scleroderma-related facial
changes, her sense of “being known,” of being
recognized and acknowledged by others, is likewise compromised.
For example, Laura related an experience in which she ran
into an old friend whom she had not seen in years. She recognized
and greeted him immediately, but because of her facial changes
he did not know who she was. She said this experience, “brought
tears to my eyes. It made me feel like I had a tremendous
loss and part of me just didn’t exist anymore.”
Helen recounted a similar experience in which she happened
to run into a friend she had not seen in some time. Helen
said that she greeted her friend but upon seeing Helen, her
friend lamented, “Oh, that’s not my Helen! That’s
not my Helen!”
Like Laura and
Helen, Lynne had a similar experience with a group of friends
she had recently come to know who had not known her prior
to the advent of her facial changes. She said that one day
they were all looking at a wall of pictures at her home when
they saw a picture of her prior to her facial changes. She
said that evidently they did not recognize that it was a picture
of her and later asked her husband, in private, if this was
a sister of Lynne’s who had died. Lynne recounted her
experience of this loss:
Lynne:
That does get to you after a while, when (your friends)
don’t even recognize you at all after knowing you
for a year. And they see an old picture (before the facial
changes) and they go, they think it is (your sister) who
had died. They recognize there is a resemblance, but it
has got to be somebody who has died. And, yeah, in a way,
it is somebody who has died, and that hurts.
All of the participants
had difficulty maintaining their self-concept or self-picture
because of their facial changes. What occurred for these women
was that the image or appearance of their face with scleroderma-related
facial changes was inconsistent with their image before the
facial changes, thus causing their experience of identity
dissonance. Essentially, they were unable to reconcile their
present image with that of the picture they had previously
held of themselves before the facial changes manifested. This
experience was eloquently described in Lynne’s testimony
below:
Lynne:
It feels like, I sometimes feel like I’m still looking
out through the face I had but thinking, I see myself inside,
I visualize myself the same as I used to be, but knowing
people are seeing the mask instead. And it bothers me because
I want to say to people who see me for the first time; I
want to say, “This isn’t me. Let me show you
what I really look like.” And the first thing I want
to do is show them pictures (of myself before the facial
changes). “That’s what I look like.” Rather
than saying, “Yeah, what you see, this is it.”
Phase III:
Resistance and Denial
Resistance and denial are defenses against feeling identity
dissonance. There are myriad ways in which resistance and
denial can manifest for a woman. With respect to resistance,
a woman may resist the facial changes by attempting to conceal
them from herself and others. These concealment behaviors
reside along a continuum ranging from a woman’s avoidance
of mirrors, to a refusal to have her picture taken, to the
use of clothing or make-up to hide these changes, or to a
decision to withdraw from various social activities or to
remain secluded in her home. A woman’s social withdrawal
may be interpreted as an extreme attempt to separate herself
from her “social mirrors.” In other words, it
is an attempt to separate herself from people who reflect
these facial changes back to her. This reflection can be in
the form of stares, whispers, double-takes, and intrusive
questioning.
Denial occurs when
a woman succeeds in believing that she still looks similar
to the way she did before the facial changes occurred. For
many of the participants, denial, as an unconscious emotional
defense, was propelled into action because of the unique way
scleroderma-related facial changes manifest. For example,
for individuals who have a sudden and dramatic change of face
due to an accident or injury, denial is less available; it
is very difficult to believe one’s appearance is the
same when there is immediate and incontrovertible evidence
to the contrary.
However, the way
in which scleroderma-related facial changes manifest is gradual
and less radical. Additionally, the types of physical changes
that actually occur to the face during this process are not
as outwardly obvious—most of the changes are occurring
“beneath the surface” and leaving the most superficial
features intact. Thus, many women with scleroderma-related
facial changes present with a facial appearance that does
retain a resemblance to its former image. As a result, these
women may truly believe they look the same, and in fact, on
some level they do; so denial remains intact.
Significant others
may inadvertently play a role in helping a woman with scleroderma-related
facial changes remain in denial as well. For example, a number
of the participants reported that family members, friends,
and doctors had told them, in one way or another that their
facial appearance really had not changed as a result of scleroderma.
We do not know whether these individuals were being honest
with the participants, or whether they felt compelled to “spare”
the participants’ feelings, or whether they too were
in denial because they were exposed to the same phenomenon
as were the participants. In other words, the manner and manifestation
of scleroderma-related facial changes made it difficult for
significant others to really grasp the significance of the
facial changes as well.
Resistance and
denial are challenged when a woman is taken off guard by unexpectedly
catching her image in an object, or seeing herself in an object
from a novel position or angle (e.g., three-way mirror, profile
shot).
Kara:
I was in a gorgeous hotel room and it had a front, rear,
and two-sided (mirror) and I never see myself from the side.
And I went in there and I went, “Oh, my God! This
is what I look like!” I was—I’d never
been confronted with looking at myself that way.
Lynne:
I didn’t see (the facial changes) really happening
when I looked straight on (in the mirror).... It wasn’t
until I saw the picture of the side view that I was like,
“Oh geezzz!” And the actual picture ... it was
taken of (my husband) and I together. It was a side shot
... that’s when I saw (the facial changes) and I went,
“Oh my God! This is what I look like!”
Resistance and
denial can be helpful defenses to a degree, but they can become
dysfunctional. As has been demonstrated here, there’s
a certain fragility in maintaining these defenses—they
can be easily shattered by objects and individuals reflecting
the presence and reality of a woman’s facial changes.
Phase IV: Reorganization
and Integration
Reorganization is the phase in which a woman with scleroderma-related
facial changes integrates the facial changes into a revised
self-picture. She can acknowledge that she has undergone a
change in facial appearance, but she has come to an understanding
that these changes are not what define her as a person. It
is in the reorganization phase that a woman finds new meaning
in her life; she experiences an increase in self-esteem; and
her values and priorities change, as well as her goals and
roles.
There are many
factors which may facilitate a woman’s transition into
the reorganization phase. Five factors were seen repeatedly
in connection with the participants’ movement into this
phase. These factors included:
- supportive husbands;
- social support, including scleroderma support groups;
- psychiatric interventions which included counseling and
psychotropic medications;
- religion or spirituality; and
- an internal shift from an emphasis on physical characteristics
to dispositions.
The vast majority
of participants in this phase experienced a combination of
these factors. It appeared that the greater the number of
these factors a participant experienced, the more successful
the participant was in the reorganization phase.
It is important
to point out that reorganization is not an end point, but
instead, a place on the loss-of-face continuum. Rather than
“arriving” and then remaining forever at such
a place, a woman, throughout her life, moves fluidly from
one end of the continuum to the other. Not unlike her experience
in other phases, a woman in the reorganization phase can regress
to earlier phases and return again to the reorganization phase;
she does not remain fixed forever in one phase or only move
in one forward direction. However, the more a woman is able
to incorporate the facial changes into her overall identity,
the more likely it is that she will experience a sense of
personal integration and emotional health and well-being.
It is evident from Veronica’s passage below that she
has come to experience such integration:
Veronica:
I’ve learned that beauty is only skin deep. If you
think, if you’re a good person, you try to live a
good life, and do right by people.... I think if you are
a good person inside, that that shines through ... having
a scarred face, inability to do things, should not take
away from who you are. These are only physical aspects and
they are not who your true person is, who your soul is,
who your heart is.... I think that you need to realize your
own value of who you are because that’s most important;
and I don’t care what you look like.
In the next issue,
we will further explore this phase and suggest how individuals
with scleroderma-related facial changes, and people who
are an integral part of their lives, can relate and work
effectively with each other regarding these changes.
Go to Part 1 of "Losing
Face."
Go to Part 3 of "Losing Face."
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