Vitiligo: Patient stories, self-esteem, and the psychological burden of disease

Abstract

Vitiligo is a relatively common disorder that is characterized by depigmented patches of skin. Multiple studies characterize the overwhelming psychological burden that is experienced by many patients around the globe. This review examines personal patient stories and the impacts of age, culture, sex, race, and ethnicity in relationship to altered self-esteem and quality of life in patients who live with vitiligo.

Introduction

Vitiligo is an acquired disorder of pigmentation that is characterized by depigmented patches of skin due to the loss of melanocytes. Depigmented patches may appear in a localized or very generalized distribution. Vitiligo affects 1 to 2% of the global population with an equal incidence in male and female patients and in all racial/ethnic groups (Grimes, 2016a). Multiple theories have been proposed regarding the pathogenesis of this disorder (Harris, 2017). Current data suggest that vitiligo results from the complex interplay of genetics, oxidative stress, and autoimmunity (Grimes, 2016a). Recent studies document the role of CD8 lymphocytes and the interferon-γ CXCL10 cytokine signaling pathway in mediating the destruction of melanocytes in patients with vitiligo (Harris, 2017).

Therapies for vitiligo address the stabilization of the disease as well as the repigmentation of depigmented patches. Therapies that affect disease progression include systemic steroid medications, oral mini-pulse corticosteroid therapy, minocycline, and methotrexate. First-line therapies for repigmentation include topical corticosteroid medications, calcineurin inhibitors, and narrowband ultraviolet B phototherapy (Grimes, 2016b).

Many global cultures and societies place a profound significance on appearance, esthetics, and pigmentation. Any condition that affects appearance may be fraught with loss of privilege, opportunities, and often upward societal mobility (Grimes, 2008). Given the inherent visibility of skin disorders, self-esteem is often compromised. The feeling of being ugly or undesirable has been described in patients with a myriad of cutaneous diseases that range from acne to alopecia areata to vitiligo. Skin disorders that negatively alter appearance have the potential to affect an individual’s career as well as personal and social interactions. This effect on self-esteem and perception of beauty transcends race, age, sex, and socioeconomic status. Societies that have a cultural preference for specific skin tones often perceive pigmentation as a passport to society, and perceived defects are often devastating (Grimes, 2008).

Multiple studies have documented the psychological devastation that is inflicted by vitiligo. The seminal study by Porter et al. (1979) documented the negative impact of vitiligo on patients’ self-esteem. The authors reported that patients who had lower self-esteem coped poorly with the disease, but patients with higher self-esteem coped better. Subsequent global studies have consistently reported the negative impact of vitiligo on patients’ self-esteem and quality of life (QoL). Vitiligo causes isolation, stigmatization, loss of self-esteem, depression, and self-consciousness. Herein, we highlight several patients’ personal experiences in coping with vitiligo and review the psychological impact of this traumatic disease.

Patient stories

Subject 1: 13-year-old Hispanic female patient (Skin Type IV)

I was about 6 years old when I found out I had vitiligo. At first, I didn’t know what it was but I quickly learned. When I was growing up, I didn’t care what I looked like. Then, I switched schools and I didn’t know what kids at school would say or think of me. However, they quickly learned and they accepted me for me. They don’t care what I look like, which makes me feel happy. When I’m not at school, I will have my moments when I start to cry and tell myself horrible things like “I’m ugly,” “what did I do to deserve this,” and “I’m a horrible person.” I know my family loves me for me, but sometimes it doesn’t feel like enough. Now that I’m entering my teen years, I’ve started to care more about my self-appearance and self-esteem. I don’t feel pretty with my spots. Sometimes I wish I could go back to my younger self [who] didn’t care. I look at pictures of myself without spots and say to myself, “Wow, I didn’t remember what certain parts of my body looked like and now they look very different.” I know my teen years will be very different and I will need to turn to my family and friends for support.

Subject 2: 50-year-old African-American male patient (Skin Type VI)

I knew it was going to be a problem when I just finished lunch with a friend and she said, “You have something on the side of your mouth.” I was working at WABC TV in New York City as the entertainment reporter. I had gone to the MTV Awards. I saw Michael Jackson’s performance on stage. Earlier in the week, I interviewed Whoopi Goldberg for a reprise of a one-woman show. I was 26, in the biggest city, at the biggest station, and on the top-rated newscast. AND THERE WASN’T ANY FOOD ON MY MOUTH! It was my skin.

I had been able to cover the small spots on my hands and scalp… and the one small spot just under my nose. But after eating, the corners of my mouth could not be hidden. I thought the life I had created was over. I didn’t know how to react. And with time it got much worse. My Emmy Award winning face was gone. I was a splotchy mix of black and white. And I went through some stages: grief, fear, grief, anger, grief, and acceptance. And let me be clear. IT’S BEEN YEARS… of questioning, emotional struggle, and crazy looks but the truth is a little shocking. This disease has become my blessing.

My name is LT, and I am an entertainment reporter/host in Detroit. I travel the world covering entertainment. I am also thankful to be an advocate for people like me. And I don’t just mean people whose skin changes so drastically people question if they should shake your hand or hug you. I mean people who are struggling to exist comfortably and lovingly in their own bodies.

Vitiligo can be a challenge but I have found support and guidance leading to pride for my skin. I have created a life of my own definition. And now, I can’t imagine my journey any other way. I have become a more loving and compassionate man. I am embracing the stares and directing the attention, when appropriate, to positive ends.

How do I live with vitiligo? I LIVE! Oh, and by the way, I have vitiligo.

Subject 3: 62-year-old Caucasian female patient (Skin Type II)

Born with a bathing trunk melanocytic nevus, all my life I’ve been self-conscious about my skin. Finding a one-piece bathing suit to cover my flank, back, and right upper thigh wasn’t possible, but I imagined that the patches of brown that peeked out didn’t show. No such luck in locker rooms where, fully naked, I heard taunting as a child and gasps as an adult. I preemptively warned medical professionals after hearing the question “Have you been beaten?” too many times.

But nothing prepared me for the white patches that suddenly emerged in my thirties and that now, in my sixties, cover large areas of my body and face. You would be wrong to assume that as a white woman, patches of nonpigmented skin aren’t noticeable or that they don’t provoke anguish. Perhaps if I were alabaster white, I’d feel differently, but I think not. To lose color is to be a pale reflection of one’s former self, to lose vividness and vitality. Moreover, in my case, vitiligo is likely a result of my nevus, of my body killing its own melanocytes like Pac-Man scrambling to kill the ghosts before they kill him. In my twenties, I was told for the first time that my nevus could kill me. Vitiligo proves the point.

I know that vitiligo is a far greater cosmetic affliction for black and brown people. In fact, I feel guilty for complaining or becoming distressed when people say, “But I can’t see it.” Though often said with good intentions, such dismissals compound my distress because they gaslight me and incite guilt. Besides, it is noticeable. Ask the gastrointestinal doctor who pointed it out to his students when trying to figure out why I perforated my colon. Ask the cosmetician trying to sell me foundation not knowing which skin color she should match. I’m brave. I act like it’s nothing, just as I learned to do with my nevus. Then I go home. And then I cry.

People with skin conditions and perhaps other autoimmune disorders often feel tremendous guilt. Have we caused our lesions because our emotions are intense, because we’re angry, because we can’t handle the normal stresses of life? Has it spread because we don’t meditate or do yoga or eat enough kale? John Updike called psoriasis, a condition he hid for much of his life, a dermal sin to which he had to confess. Never mind that we control very little in our lives, our culture demands, indeed, runs on the illusion that we have control if only we would seize it.

Incurable and unpredictable, vitiligo could not have provided a more perfect spur to the anxiety and depressive disorders I’ve had to manage since childhood. My clothes can no longer hide my skin disease. My skin has become a living metaphor.

But meet me on the street tomorrow and you’ll never know that I’m hopeless or hiding. Be a fly on the wall in my wonderful dermatologist’s office and you’ll hear me tearfully confess my dermal sins and, perhaps, decide to begin treatment anew. Because when your doctor has a great, big soul, you too might say to yourself, why not? Why not keep trying?

These stories are profound personal narratives of stigmatization, loss of self-esteem, emotional traumas, grief experiences, and coping strategies. They reflect and provide a cross-cultural, multi-ethnic, age, and sex perspective of the burden of disease (Fig. 1, Fig. 2, Fig. 3).

Fig. 1.

Depigmented patches on the trunk and axillary region of a 52-year-old African-American female patient

Fig. 2.

Extensive depigmented patches on the back of a 48-year-old Hispanic female patient

Fig. 3.

Severe depigmented patches on the trunk of a 9-year-old Caucasian female patient

Impact of sex, culture, and race/ethnicity

The impact of vitiligo on patients’ QoL has been assessed in global populations, and the outcomes vary. However, most results substantiate the negative impact of the disease on patients’ QoL (Table 1; Bae et al., n.d, Belhadjali et al., 2007, Bhandarkar and Kundu, 2012, Borimnejad et al., 2006, Boza et al., 2016, Chan et al., 2013, Elbuluk and Ezzedine, 2017, Ezzedine et al., 2015a, Ezzedine et al., 2015b, Ingordo et al., 2014, Kiprono et al., 2013, Komen et al., 2015, Ongenae et al., 2005, Parsad et al., 2003, Radtke et al., 2009, Silverberg and Silverberg, 2013, Talsania et al., 2010, Teovska Mitrevska et al., 2012).

Table 1.

Review of various studies in the literature that chronicle the extent vitiligo on QoL in different countries and patient populations

Title of study	Country	Number of subjects	Skin phototype	DLQI score (SD)	Comments
Living with vitiligo, results form a national survey indicate differences between skin and phototypes (2015)	France	300 (216 F, 82 M)	Fair (n = 234)*; Dark (n = 66)** *Fitzpatrick I-III, **Fitzpatrick IV-VI	Fair: 8.3 (6.2); Dark: 10.1 (6.1)	Patients with darker skin type reported statistically significant (p = 0.049) higher DLQI scores
Investigating factors associated with depression of vitiligo patients in Singapore (2013)	Singapore	222 (115 F, 105 M)	Not assessed	4.0 (4.4)	Female patients reported statistically significantly higher DLQI scores, 4.8 (5.1) vs. 3.2 (3.2), respectively.
Quality of life in family members of vitiligo patients: A questionnaire study in Saudi Arabia (2013)	Saudi Arabia	148 (72 F, 69 M)	Not assessed	9.0 (6.5)	Family DLQI was measured and found to be 10.3.
To what extent is quality of life impaired in Vitiligo? A multicenter study on Italian Patients using the DLQI (2014)	Italy	161	Not assessed	4.3 (4.9)	More severe QoL impairment was associated with the female sex.
Association between vitiligo extent and distribution and quality of life impairment (2013)	United States of America	1541 (1080 F, 433 M)	Not assessed	5.9 (5.5)	Affected BSA > 25% was correlated with significant QoL impairment.
Factors affecting the quality of life in patients with vitiligo: A nationwide study. (2017)	Korea	1123 (514 F, 609 M)	Not assessed	DLQI not used	Skindex-29 used as a QoL measurement. Larger BSA involvement, involvement of visible body parts and higher educational level were all associated with larger QoL impairment.
Quality of life impairment in children and adults with vitiligo: A cross-sectional study based on dermatology-specific and disease-specific quality of life instruments. (2017)	Brazil	117 (75 F, 42 M)	Not assessed	3	Women had statistically higher DLQI scores than men (3.0 vs. 2.0, respectively).
Quality of life with vitiligo: Comparison of male and female Muslim patients in Iran. (2006)	Iran	77 (53 F, 24 M)	Not assessed	DLQI not used	Modified DLQI used, women with vitiligo experienced significantly lower QoL compared with men.
Dermatology Life Quality Index score in vitiligo and its impact on the treatment outcome. (2003)	India	150 (83 F, 67 M)	Not assessed	10.7 (4.6)	No statistical significant difference in DLQI scores related to sex. Age of vitiligo subjects and DLQI scores were correlated.
Quality of life of patients with vitiligo attending the Regional Dermatology Training Center in Northern Tanzania. (2013)	Tanzania	88 (52 F, 36 M)	Not assessed	7.2 (4.8)	Female sex, BSA affected and previous treatments were statistically significantly associated with higher DLQI scores.
Willingness-to-pay and quality of life in patients with vitiligo. (2014)	Germany	1023 (731 F, 292 M)	Not assessed	7.0 (5.9)	Female patients experienced higher DLQI scores (7.0) versus male patients (5.5).
Vitiligo and quality of life: A case control study. (2007)	Tunisia	60 (30 F, 30 M)	Not assessed	9.4 (4.1)	Quality of life was significantly more impaired in female patients and in cases with more than 10% BSA involvement.
Vitiligo is more than skin deep: A survey of members of the Vitiligo Society. (2010)	United Kingdom	520 (354 F, 166 M)	Not assessed	DLQI not used	Participants could classify their vitiligo as having a major, moderate, minor, or trivial effect on their QoL. A total of 86 patients (16.6%) rated the QoL effect as major, 206 patients (40.2%) as moderate, 152 patients (29.7%) as minor, and 50 patients (9.8%) trivial.

BSA, body surface area; DLQI, Dermatology Life Quality Index; F, female; M, male; QoL, quality of life; SD, standard deviation

In a large study of 1541 patients, the authors evaluated the associations among vitiligo extent, distribution of disease, and QoL impairment. Vitiligo had indeed a negative impact on total Dermatology Life Quality Index (DLQI) scores. Scores were significantly associated with an affected body surface area (BSA) of greater than 25% and body parts affected (Silverberg and Silverberg, 2013). Eighteen percent of patients reported sexual dysfunction, with equal frequency in male and female patients, which correlated with the presence of genitalia lesions. In contrast, other studies have reported greater sexual dysfunction in female patients compared with male patients (Borimnejad et al., 2006). In an Italian population of 161 patients, although vitiligo had only a mild impact on QoL, DLQI was significantly associated with female sex and facial involvement at the time of the onset of the disease.

Several studies have compared the QoL of patients with vitiligo to that of patients with other chronic dermatological diseases such as psoriasis. Porter et al. (1986) and Ongenae et al. (2005) both reported higher DLQI scores in patients with psoriasis overall. However, in the study by Porter et al. (1986), self-esteem measures did not differ. In contrast, Ongenae et al. (2005) reported that although women with vitiligo and psoriasis had comparable scores, men with vitiligo had significantly lower DLQI scores compared with men with psoriasis, which again indicates a sex divide in coping with the disease.

Myriad authors have reported a relationship between culture and the psychological burden of vitiligo. Historically, patients in India experience psychological trauma and stigmatization. In the Indian book Rigveda, a person who suffers from Switra (vitiligo) and the person’s progeny are disqualified from marrying (Elbuluk and Ezzedine, 2017, Ezzedine et al., 2015a, Ezzedine et al., 2015b). The psychological burden of the disease is profound for young, unmarried women. Given the systems of arranged marriages, vitiligo lessens the possibilities for marriage. Moreover, in married women who develop vitiligo, the disease increases the possibility of divorce. Finally, patients in India with high DLQI scores did not respond as well to therapies for repigmentation, which suggests that psychological intervention should be included in the hierarchy of therapies for vitiligo (Parsad et al., 2003).

Thompson et al. (2010) interviewed seven South Asian women who lived in the United Kingdom and analyzed their data with a qualitative method of template analysis. All women experienced stigmatization, which was often associated with cultural values that are related to appearance and myths of vitiligo. One woman stated, “My grandma (in Pakistan) was like, ‘Oh you can’t take her with you (to visit friends and family) because of her skin, what will other people say?’”

The assumption is often made that the psychological burden of vitiligo is greater in racial/ethnic groups with darker skin. A recent survey stratified 300 patients by skin phototype, including 234 patients with fair skin and 66 patients with dark skin. The patients with darker phototypes were of Caribbean, South Indian, or Middle Eastern ancestry. Even though the dark skin phototypes perceived a significantly greater difference in the burden of vitiligo on daily life, overall self-perceived stress that was associated with vitiligo was similar regardless of the skin type (Ezzedine et al., 2015a, Ezzedine et al., 2015b). In contrast, Porter and Beuf (1991) studied vitiligo in 158 patients and found no differences in the degree of disturbance of vitiligo in African-American and Caucasian patients. Even though both groups were affected negatively by the disease, self-esteem and perceived stigmatization of vitiligo were similar. These findings raised the possibility of different support networks and resources that may affect African-American patients’ coping skills for vitiligo (Porter and Beuf, 1991).

Anatomic involvement

As noted, studies have reported that a greater extent of BSA involvement has a correlation with a more severe impact on patients’ QoL (Silverberg and Silverberg, 2013). In addition, multiple studies have found that lesions that affect more visibly prominent areas such as the face and hands and more sensitive areas such as the genitalia have a more severe impact on patients’ QoL.

Patients with involvement in unexposed genital areas often do not report these lesions to healthcare providers out of embarrassment or even stigmatization that this could be related to a sexually transmitted disease. Genital involvement and generalized vitiligo are significant risk factors that affect patients’ sexual lives (Cupertino et al., 2017). In a study of 167 patients, 14% had vitiligo patches in their genital area; of those, 21.6% reported that vitiligo negatively affected their sexual relationships (Kim et al., 2013). Talsania et al. (2010) found that 56% of survey respondents reported genitalia involvement, which is a much higher number than previously reported. The authors also found that 76% of survey respondents had facial involvement and considered this to be more disfiguring, with 56.6% of respondents classifying the effect on their QoL as moderate to severe.

Impact on children

Children comprise 25 to 38% of patients with vitiligo (Grimes, 2016a). Several studies have addressed QoL impairment in children with vitiligo. Boza et al. (2016) assessed QoL in a series of adults with the Vitiligo Quality of Life Assessment (VitiQol) and the DLQI and in pediatric patients using the Children’s Dermatology Life Quality Index (CDLQI) and found a significant correlation between age and CDLQI score in children. In another study, the QoL of 50 children with vitiligo was compared with 50 children with atopic dermatitis and healthy controls who were matched for age and sex. Patients with vitiligo had significantly higher CDLQI scores compared with healthy controls. CDLQI scores were also significantly increased compared with those of patients with atopic dermatitis except in the parameters of pruritus and sleep (Dertlioğlu et al., 2013).

QoL assessed by the CDLQI was examined in 24 boys and 50 girls with matched controls for sex and skin type. Even though the QoL in the patients with vitiligo was not significantly impaired, they reported a spectrum of negative experiences. Sixty-six percent of patients were distressed by their disease, and 92% had experienced low-key stigmatization (Krüger et al., 2014).

Silverberg and Silverberg (2013) performed an online, parental, questionnaire-based study of 350 children ages 0 to 17 years using the CDLQI and showed that vitiligo negatively affected CDLQI scores. The most bothersome sites for children and their parents were the face and legs. A BSA greater than 25% was associated with self-consciousness, fear, and bullying. Teenagers ages 15 to 17 years experienced the most self-consciousness of all pediatric age groups (Silverberg and Silverberg, 2013). Another study reported that, in general, social and psychosocial development and general health-related QoL in young adult patients with childhood vitiligo were not different from those of healthy controls. However, patients who reported negative childhood experiences had significantly more problems in social development as adults compared with those with positive experiences (Linthorst Homan et al., 2008).

As with adults, these studies suggest that children experience substantial trauma related to vitiligo.

Effects of disease on family members

Several studies have assessed the QoL of family members of patients with vitiligo. One report in the literature studied 50 families of children with vitiligo and 50 families of healthy children. The psychological impact of the disease on parents was measured using the Self-Rated Health Measurement Scale (SRHMS) and the Dermatitis Family Impact (DFI) questionnaire. SRHMS scores for parents of children with vitiligo were significantly lower than for parents with healthy children, and mean DFI scores in affected families were higher. The findings suggest that parents of children with vitiligo suffer significant psychological trauma and an altered QoL. The impact on mothers of children with vitiligo was greater compared with fathers (Amer et al., 2015).

Another study assessed the QoL of family members of patients with vitiligo in Saudi Arabia. Data were collected for 141 patients along with their family members over age 18 years who were living in the same household. Validated QoL questionnaires included the DLQI and the Family Dermatology Life Quality Index (FDLQI). Family members’ QoL was negatively impacted in 91.5% of cases. Hence, vitiligo had a major impact on the QoL of family members of patients. The most affected FDLQI that was reported by the authors, in order of decreasing frequency, were emotional impact, burden of care, impact on the physical wellbeing of family members, reactions of others in response to the patient’s appearance, and effect on social life (Bin Saif et al., 2013).

Intervention strategies

Many clinical trials and reviews do not address QoL as an outcome measure, despite overwhelming evidence of the psychological burden of vitiligo. A study published in 2012 found that repigmentation was the most common outcome measured in clinical trials (96%) and only 9% of clinical trials had assessed QoL outcomes. The authors proposed that future clinical trials address the following items in addition to repigmentation: cosmetic acceptability of results, global assessment of the disease, QoL and maintenance of repigmentation, stabilization of disease, and medication side effects (Eleftheriadou et al., 2012).

There is indeed a dearth of literature that addresses the need for a spectrum of intervention approaches to improve the psychological burden of vitiligo. In a study of 53 patients in India, major depressive disorder was reported in 57% of patients, social phobia in 68%, and suicidal ideation in 28% (high risk 8%; low risk 21%). These findings stress the need for psychological and/or psychiatric intervention (Ramakrishna and Rajni, 2014). Papadopoulos et al. (Papadopoulos et al., 1999) reported that counseling and cognitive behavioral therapy could improve self-esteem, body image, and overall QoL in patients with vitiligo.

Cosmetic camouflage was recently shown to improve the QoL of children with skin disorders. Twenty-two children with different cutaneous disorders were studied, of whom eight had vitiligo. The authors found that there was a statically significant reduction in CDLQI and FDLQI scores with cosmetic camouflage (Salsberg et al., 2016).

Conclusions

Vitiligo is one of the most psychologically devastating diseases in dermatology because of the global paradigm of pigmentation as a passport to society in many cultures. Although the contrast of depigmented patches is most visible in racial/ethnic groups with darker skin, all patients with vitiligo experience some degree of emotional devastation that is caused by the disease. Physicians must have a heightened awareness of the impact of vitiligo on self-esteem and QoL. Such awareness and vigilance as clinicians in monitoring and addressing the mental health needs of patients with vitiligo is crucial to optimize patient care. Interventions should address dispelling myths that surround vitiligo, including the notion that vitiligo is a cosmetic disease, while offering or providing optimal therapies for repigmentation.