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)

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:

1. awareness threshold;
2. identity dissonance;
3. resistance and denial; and
4. 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:

1. a woman must become visually aware of these changes for herself; and
2. 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:

1. a doctor may inform her about these changes;
2. she may read about these changes in scientific, popular, or scleroderma-related literature, or on the Internet; or
3. 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:

1. supportive husbands;
2. social support, including scleroderma support groups;
3. psychiatric interventions which included counseling and psychotropic medications;
4. religion or spirituality; and
5. 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.