Finding Vitiligo Communities and Support

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Published on September 20, 2021

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Affecting between 1% and 2% of the global population, vitiligo is one of the most common skin pigmentation disorders. Causing patches of white skin on any part of the body, this incurable condition isn’t life-threatening, and there are few other symptoms. However, since it affects how you look, it can significantly impact self-esteem and be a source of social stigma.

This is why it’s so important to find sources of social support if you’re living with vitiligo. Supportive networks start with your family, loved ones, and friends, and can expand into in-person and online communities of others with this condition. Since vitiligo isn’t well-known, having it may also involve educating others and advocating for friends and family members with it.

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How Vitiligo Impacts You

One of the biggest misconceptions about vitiligo is that it’s just a cosmetic issue, so its effects aren’t serious. Since most societies worldwide place an emphasis on physical appearance, people with this disorder can feel insecure by the way it makes them look. Finding community and support can help you cope with its social and psychological effects.

What sorts of challenges do you face if you’re living with vitiligo? Here’s a breakdown:

Low self-esteem is especially common with disorders that affect physical appearance, and this is certainly the case with vitiligo. The discolored areas of skin may make you feel self-conscious or unattractive.
Depression and anxiety, often associated with low self-esteem, can also arise. If you’re feeling anxious or depressed due to your condition, be sure to talk to your dermatologist (a medical specialist who treats conditions of the skin), who may recommend mental health counseling.
Social isolation and stigmatization also occur among those with vitiligo, which can lead to a reduced quality of life. Concerns about self-image and appearance—as well as the constant need to manage the condition—can get in the way of your social life and can affect working relationships.
Impacted sex life and personal relationships also arise with vitiligo due to its effects on self-esteem and self-image.

No doubt, the help and support of family, loved ones, friends, and peers can be instrumental in managing these often closely related challenges.

Finding Support

Especially because vitiligo is chronic and requires lifelong management, it’s a condition you shouldn’t face alone. A reliable support network can help you cope with the psychological challenges and social stigma associated with this disorder. In fact, according to a study conducted in India in 2018, quality of life scores were higher among patients who were socially connected and felt more supported than for those lacking connection and support.

So what can you do to bolster your support network? According to the American Academy of Dermatology (AAD), the key is to look to your family and friends and to find community locally and online.

Enlisting Family and Friends

It’s important to talk to your partner, spouse, family, and friends about what vitiligo is and how it affects you. Not only can they provide a sympathetic ear, but they can also help you build a positive self-image. Furthermore, engaging with those close to you and staying in contact with them can help combat loneliness and social isolation.

Finding Local Community

Talk to your doctor about support groups for those living with vitiligo or other skin disorders. Guided group sessions can help you connect and share experiences with others also coping with these kinds of issues. In addition, other regular social contact, such as through walking groups or athletic leagues, can become additional outlets and sources of support.

Seeking Support Online

Since only a small portion of the population experiences vitiligo, it can be helpful to find community online or on social media. This can mean looking to:

Facebook groups devoted to vitiligo
Additional social media (Instagram, Twitter, Clubhouse, or LinkedIn accounts)
Online discussion boards

These platforms allow patients from around the world to interact and to learn from and support each other. Such connections and interactions can also help remind you that there are others like you out there, and that you’re not alone.

Patient Advocacy Organizations

As important as it is to develop a support network for yourself if you have vitiligo, it’s also crucial to educate others and raise its visibility. Vitiligo is relatively obscure, so many simply may not be aware of it. Further, advocating for those with this condition helps reduce stigmas associated with it.

Nonprofit Organizations for Vitiligo

This is where nonprofit organizations dedicated to vitiligo research and advocacy, such as Vitiligo Support International, the Global Vitiligo Foundation, and the Vitiligo Society, can help.

In addition to being great sources of helpful information for patients, these organizations promote both public education about the condition and research into its causes and management.

A Word From Verywell

No doubt, there are a great deal of challenges associated with vitiligo, and these are made more complicated because of the relative obscurity of this disorder. Management means taking on the physical symptoms as well as tending to the associated social and psychological issues.

Crucial in all of this is that you actively combat the alienation and isolation that can be caused by vitiligo. Making sure you find the support you need—from loved ones to fellow vitiligo patients to experts and advocates—will not only be helpful to you, but to others living with this skin disorder.

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