New UK Vitiligo Survey Highlights Social and Psychological Impacts of the Condition—and Calls for Change

Erika Page is the Founder and Editor of Living Dappled.…

Opzelura. JAK inhibitors. Skin grafting. With all the progress for vitiligo within science in recent years, there’s less conversation about the flip side—the people living with the condition day to day. How much data do we really have about trends and commonalities among people living with vitiligo? Like, what’s it like trying to get a diagnosis or treatment? How has vitiligo affected your quality of life? What support do people living with vitiligo need? The answer has been, sadly: not much. And that’s exactly why a new study out of the UK is garnering attention.

The Vitiligo Society, a UK charity established in 1985 and dedicated to supporting those living with vitiligo, released the results of an extensive survey of people living with vitiligo this March. The 25-page research report, titled “Exploring Perceptions and Experiences with Vitiligo,” was prepared by an independent research firm based on responses from more than 700 people living with vitiligo—the largest study of its kind ever completed in the UK.

The key finding? Those living with vitiligo are still very much in need of medical and social support. From diagnosis to everyday life, there are many opportunities for growth both within the medical community and in society in general, to help those with vitiligo feel seen, heard and accepted. This research represents an important first step in fostering awareness and empathy for the human side of vitiligo.

We’ve combed through the report and compiled some essential takeaways for you here (and the full report is definitely worth a read).

Survey methodology

In partnership with behavioral insights research firm Social Change Ltd., the Vitiligo Society established a clear scope for their research before composing the survey itself. From there, an insights survey was devised based on the COM-B Model of Behavior. Questions aimed to find out more about the lived experience of those with vitiligo, as well as measure the awareness of the condition among the general population.

Over 700 people living with vitiligo completed the survey. In addition, the research firm conducted in-depth interviews with 20 individuals who participated in the survey.

Respondents ranged in age from 16 to 85+, with a gender breakdown of 73% female, 26% male, and 1% other. A majority (69%) of those surveyed live with nonsegmental vitiligo, while 9% have segmental vitiligo, 14% have universal vitiligo and 9% weren’t sure what type of vitiligo they have.

The number of years respondents have lived with vitiligo ranged from 6 months to 1 year (1%) to 15+ years (62%). A majority (68%) are the first member of their family to experience vitiligo. Rather than asking about ethnicity, the survey inquired about skin tone, and about half (58%) the respondents reported having light or very light skin, while 42% reported having medium, dark or very dark skin. For most respondents (65%), their vitiligo is still spreading either slowly or rapidly, and only about 30% said their vitiligo patches are stable.

Key findings

The Vitiligo Society has bigger goals than merely gathering statistics: their survey data aims to “raise awareness about the impact of having vitiligo and how to get support” as well as guide the organization’s strategy as they work to provide resources to the vitiligo community, according to press materials. And their key findings certainly highlight the need for better support for those living with vitiligo:

About one-third of people with vitiligo felt dismissed (33%) and/or confused (29%) when they first spoke to their healthcare provider about vitiligo
A majority of respondents (79%) say having vitiligo has a negative impact on their appearance
Nearly two-thirds say vitiligo has a negative impact on their mental health (63%) and/or they feel insecure and self-conscious (64%)
About 4 in 10 are concerned about other people’s reactions to their appearance (39%) and/or struggle with being stared at or judged by others (38%)
Half say it has negatively affected their social life (49%) and/or that they feel isolated and depressed (46%) (Source)

Vitiligo journey

While everyone’s vitiligo story is unique, several factors influence most vitiligo journeys. The survey identifies these three main factors: an individual’s previous knowledge of vitiligo before diagnosis, their age at diagnosis and their type of vitiligo. Survey data shows that a diagnosis in childhood tended to result in a more positive relationship with vitiligo overall, while many who received their diagnosis in the teen years or later found vitiligo more challenging to come to terms with.

The Vitiligo Society notes that, in an ideal world, a vitiligo diagnosis should be the start of a journey in which the patient is empowered and informed to live life well with vitiligo. Instead, the study data reveals that the opposite is often true: about one-third of people with vitiligo felt dismissed (33%) and/or confused (29%) when they first spoke to their healthcare provider about vitiligo. Or, stated another way, only 4% said they felt seen and heard by their healthcare provider during their diagnosis process. (Source)

One 21-year-old woman surveyed summed up the feeling: “I just think that medical professionals don’t know about it very much. They just really pass it off, so maybe they need more education on what it actually is.”

When first discussing their diagnosis with a GP, survey respondents described feeling:

Uninformed
Unsupported
Unheard
Distrustful
Pessimistic

Feelings such as neglect, confusion and fear were also reported. As a result of feeling unsupported by medical professionals, most survey respondents reported doing their own research to learn more about the condition—in part because they were not referred to a dermatologist or a vitiligo specialist after the initial diagnosis.

Another gap in care concerns the psychological impact of vitiligo. Many survey respondents felt they did not receive useful information at diagnosis and stated that potential psychological effects of living with vitiligo were not addressed by medical professionals. About half of those surveyed say vitiligo negatively affects their social life and/or they feel isolated or depressed, which suggests that counseling or therapy could help many living with vitiligo. According to survey responses, psychological support seems to be under-utilized by people living with vitiligo, but offers proven benefits for coping with vitiligo—it should be made more accessible and promoted by GPs.

These findings make it clear that more can be done to educate general practitioners about vitiligo and how to handle a diagnosis appointment with compassion and empathy. And that we can’t have too many reliable, medically reviewed resources available for people who seek to educate themselves upon diagnosis.

One aspect of vitiligo many seek information about once diagnosed: treatment. As the data regarding diagnosis show, many of those living with vitiligo are dissatisfied with the quality of care they receive, and this includes guidance about treatment. Vitiligo treatments are highly individualized, and what works for one person may be virtually ineffective for another. As a result, many report their treatment journey being one of trial and error, a process that can be costly and that once again puts much of the responsibility for research onto the patient rather than the expert caregiver. Yet with 75% of those surveyed hoping for a cure for vitiligo, it’s clear that effective treatments are still deeply desired in the vitiligo community.

Impact + experience

According to the survey, vitiligo negatively affects most people who live with it—but it doesn’t have to be this way. A majority (63%) of respondents say vitiligo has a negative impact on their mental health. Additionally, “41% struggle with self-esteem and 64% feel insecure or self-conscious about how their skin looks.” These are rather bleak statistics, but with better medical care and post-diagnosis support, quality of life could improve.

A crucial factor in how well an individual copes with vitiligo? Family support. According to the report, those who already have vitiligo in their family or whose family is accepting of the condition tend to feel less alone and more able to achieve acceptance of their vitiligo. Growing up in an environment where it’s okay to be different builds resilience. A male interviewee, age 33, described his family’s attitude toward his vitiligo: “My family has always been supportive, they have never been negative about it. Like they really see the beauty in me.”

Not everyone has strong family relationships, but community and companionship are still crucial modes of coping with vitiligo and survey respondents express strong desires for supportive social connections. Being able to talk openly about living with vitiligo can help lift the weight of isolation. Finding support in the vitiligo community, such as a virtual or in-person support group or even just one trusted friend with vitiligo, offers many benefits and improves general emotional health.

Although pain is not typically considered a symptom of vitiligo, about one-third of those surveyed indicate that they do experience some physical discomfort with their depigmentation. Whether connected to sun sensitivity or other related autoimmune conditions, this experience of physical discomfort deserves attention and perhaps medical advice.

It’s difficult to disentangle the physical impact of vitiligo from its mental effects. Dealing with stares and unwanted comments in public contribute to vitiligo’s negative impact on mental health, and according to the survey, about 4 in 10 worry about others’ reaction to their appearance (39%). Those who live with vitiligo must find ways to cope with these and other challenges. As with treatment, effective coping strategies vary widely from person to person, but here are some commonly mentioned coping practices:

Exercise or physical activity
Socializing
Therapy
Talking with a close friend
Knowledge and advocacy efforts
Journaling

Read the full study

All of these statistics tell a humanizing story about vitiligo, one that can sometimes be overshadowed by scientific news or movements to embrace and celebrate the condition—worthwhile as those things are. Studies like this are a notable step in generating more nuanced awareness of the lived experience of those with vitiligo. While there is a long road ahead, with better awareness and understanding of the condition, people with vitiligo can live their lives with greater peace and satisfaction.

The Vitiligo Society’s survey reveals opportunities for better education about vitiligo among both the general public and the medical community, the need for stronger support for those diagnosed with vitiligo, and above all: the crucial role open dialogue will play in achieving those goals. To help meet this need, the Vitiligo Society has launched the #LetsTalkVitiligo media campaign to increase awareness of the experience and need for support for those living with vitiligo.

Download the Vitiligo Society’s full report and learn more about the research on their #LetsTalkVitiligo campaign website.

Erika Page

Erika Page is the Founder and Editor of Living Dappled. After getting vitiligo at the age of seven, she lost 100% of her pigment to the condition and today lives with universal vitiligo.