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Feeling Isolated and Vitiligo: Impacts, Causes, and How To Cope

Posted on January 28, 2021
Medically reviewed by
Lisa Schuster, Ph.D.
Article written by
Charity Nyawira

Vitiligo is a skin condition in which people lose skin pigment and develop patches of lighter skin called macules. These patches can be widespread or may affect just a small area of the body. Vitiligo develops when melanocytes, the cells responsible for making skin pigment, are destroyed. It is not contagious.

In some cases, the effects of vitiligo on a person’s appearance can have a direct impact on their self-esteem. Lower self-esteem may lead to anxiety, depression, and relationship problems, all of which may leave a person feeling isolated from their friends and family.

Fortunately, there are ways of coping with the feelings of isolation that may result from vitiligo.

Feeling Isolated and Vitiligo: Impact on Mental Health

Because it often causes noticeable patches on the skin, vitiligo can contribute to negative feelings like low self-esteem. A study on the correlation between the condition and personal perceptions found that the majority of people with vitiligo have low self-esteem.

Low self-esteem may contribute to the two most common mental health conditions among people with vitiligo: social phobia and depression, both of which can cause an individual to self-isolate.

Causes of Social Isolation With Vitiligo

Vitiligo may lead to social isolation, largely because of the cosmetic impacts of skin depigmentation. The insecurity and reduced self-esteem associated with vitiligo may cause people to avoid certain situations — especially those that usually involve showing skin, such as going to the beach or being intimate with others.

As one member of MyVitiligoTeam said, “It’s been so hard on me to accept it that I stopped going around my family and friends. I hardly go out of my house. The less I can socialize with people, the better for me. I am always asking my kids how they feel about me having these spots. They tell me they don’t care. I got them out of nowhere, so it’s been really hard, since I am the first of my entire family with this condition.”

In particular, social isolation in people with vitiligo may result from:

  • Feelings of unworthiness — The results of one study revealed that many respondents were embarrassed because of their vitiligo. This was found to be especially true if patches continued to increase in size, prompting psychological stress.
  • Misunderstanding and stigma — People with vitiligo may feel misunderstood, as there are many myths and misconceptions about the condition.

Despite some common misconceptions, there are ways of helping people without vitiligo understand the truth about the condition. One member of MyVitiligoTeam wrote, “It can be hard when people notice your vitiligo, particularly if they treat you differently because of it. Explaining vitiligo to them (lack of pigmentation, not contagious, etc.) often helps. Fortunately, many people will accept you for who you are.“

The Impact of Social Isolation on People With Vitiligo

People who face feelings of isolation resulting from vitiligo deal with different challenges, depending on their circumstances. One such challenge involves relationship issues. One study found that more than 50 percent of people with vitiligo reported having strained relationships.

As one member of MyVitiligoTeam shared, “I'm single, and it does give me anxiety to think of sharing intimate times with anyone new for fear they would get freaked out or disgusted, thinking maybe it's a sexually transmitted disease or something. It is pretty worrisome.”

People who have darker complexions may receive additional unwanted attention, as vitiligo is often more visible on darker skin.

Aside from vitiligo’s emotional impact, isolation due to the condition can have a number of negative effects on overall health as well. For these reasons, it’s important to identify the signs of isolation to ensure that you receive the right treatment and support.

Social Isolation in Children With Vitiligo

Like adults, children with vitiligo may struggle with feelings of isolation. In one study investigating the emotional impact of vitiligo, children who felt isolated also experienced the following issues:

  • Difficulties in peer relationships
  • Challenges involving functioning at school
  • Decline in social activities and school attendance
  • Social disorders that sometimes progressed into adulthood

The study also found that teenagers between the ages of 15 to 17 with vitiligo in visible areas, such as the face, were more likely to be teased or bullied.

Additional research on how different age groups cope with vitiligo found that children experienced the same psychosocial effects as adults. It’s important to remember that children — especially those who feel different — may struggle with mental health issues like depression, shame, embarrassment, and anxiety.

Helping Children With Vitiligo Navigate Isolation

Because vitiligo can have a significant impact on emotional well-being, psychological approaches, such as learning relaxation techniques, are often part of treatment to help both children and adults with vitiligo improve their self-esteem and body image.

To better understand the impact of vitiligo on children, MyVitiligoTeam spoke with Dr. Lisa Schuster, a licensed pediatric psychologist with the REACH Clinic at Children’s Medical Center in Dallas, Texas. Dr. Schuster specializes in stressful events and experiences, and works with children who face social, emotional, and behavioral functioning difficulties.

Dr. Schuster provided the following tips for parents to help their children better understand and live with vitiligo.

Deal With Your Stress and Provide Comfort

The first thing parents should do is deal with their own reactions. “If we are stressed about something, that's what [our children] feed off of," Dr. Schuster said. "So they need that reassurance and that comfort, that support from us.”

Know What To Say and When To Say It

Parents should learn how to explain to their children why they look different as they become aware of their depigmentation and begin to ask questions. According to Dr. Schuster, parents shouldn’t try to explain the intricacies of the disease to small children.

Instead, she recommended that parents of children with vitiligo discuss the commonalities between people, “but also the things that make us unique and special” — including vitiligo. “As we move into school-aged children — elementary, middle school, or high schoolers — we can have more articulate conversations about what vitiligo is (and isn’t), and how it develops,” she said. “It’s important to be upfront with your child and answer any questions as honestly as you can.”

Educate People Who Interact With Your Child

Proactively educating people who will interact with your child can help build their confidence. “It is important for other children to understand the fact that this is not an infectious disease,” Dr. Schuster said. “We want them to know that they can have close physical proximity with a child who has vitiligo and it won’t rub off on them.”

Validate the Child’s Feelings

Parents should allow children to talk about their feelings if they want to. Dr. Schuster encouraged parents to validate the feelings of their children instead of brushing them off. “We want children to feel like they are understood,” she said.

“Sometimes we are so quick as adults, when a child acknowledges something they were thinking or feeling, we say, ‘Don't feel embarrassed — you shouldn't feel embarrassed about that.’” Instead, parents should let children explain their feelings to foster understanding, and offer appropriate support to help them handle their emotions in healthy ways.

Notice the Signs of Emotional Distress

Depression and anxiety affect children as well as adults. Parents should watch out for the signs of these conditions, such as changes in mood, withdrawal, insomnia, or even excessive sleep (hypersomnia). If emotional concerns arise, parents can consult their child’s health care provider or a specialist, such as a therapist or psychiatrist.

Consider Seeking Treatment

Parents should consult a doctor or dermatologist to discuss treatment options. One of the most common treatments for vitiligo is phototherapy, which studies indicate may be an effective treatment for young people with vitiligo and can improve self-esteem.

Involve Children in Their Treatment Plans

It’s important to keep in mind that a child should have the final say in their treatment, Dr. Schuster said. When deciding on treatment options for a child with vitiligo, the child should be present every step of the way, she advised. “Older children should be allowed to make informed choices, with parents ensuring that the child understands the information and appreciates the consequences.” What kind of treatment they’ll receive — if they would even like to pursue treatment — should be their own decision, and one that you help them make after talking with a doctor, Dr. Schuster added.

Ultimately, talking to your child, focusing on what they need from you, and helping them understand their condition in simple, accessible terms is important to improving their self-esteem and preventing isolation.

Talk With Others Who Understand

MyVitiligoTeam is the social network for people with vitiligo and their loved ones. On MyVitiligoTeam, more than 5,300 members come together to ask questions, give advice, and share their stories with others who understand life with vitiligo.

Have you dealt with feelings of isolation due to vitiligo? Share your experiences in the comments below, or post on your MyVitiligoTeam Activities page.

References
  1. Vitiligo: Signs and Symptoms — American Academy of Dermatology Association
  2. Vitiligo: Who Gets and Causes — American Academy of Dermatology Association
  3. Vitiligo: Questions and Answers — Vitiligo Research Foundation
  4. Vitiligo: A Review of Some Facts Lesser Known About Depigmentation — Indian Journal of Dermatology
  5. Is Vitiligo a Medical Condition? — American Academy of Dermatology Association
  6. Psychiatric Morbidity and Quality of Life in Vitiligo Patients — Indian Journal of Psychological Medicine
  7. A Study to Know Correlation among De-Pigmentation of Body Areas and Sex of Vitiligo Patients with their Self Esteem and Impact of Vitiligo on Quality of Life — International Journal of Contemporary Medical Research
  8. Vitiligo: Patient stories, self-esteem, and the psychological burden of the disease — International Journal of Women’s Dermatology
  9. Vitiligo: Is It Just a Dermatological Disorder? — Indian Journal of Dermatology
  10. Quality of Life — Vitiligo
  11. The psychosocial impact of acne, vitiligo, and psoriasis: a review — Clinical, Cosmetic and Investigational Dermatology
  12. The risks of social isolation — American Psychological Association
  13. Quality of life, depression, and anxiety in Turkish children with vitiligo and their parents — Psychiatry and Clinical Psychopharmacology
  14. Phototherapy in Vitiligo: Assessing the Compliance, Response and Patient's Perception about Disease and Treatment — Indian Journal of Dermatology
  15. Impact on Quality of Life in Vitiligo Patients Treated with Narrowband Ultraviolet B Phototherapy — Indian Journal of Dermatology

A MyVitiligoTeam Member said:

Yes definitely! Since 1999 to today, 2021. I don't go anywhere I don't have to. I hate this condition. I have other very serious illnesses but I am more sad some days about this vitiligo. I am not as… read more

posted 13 days ago

hug (1)

Lisa Schuster, Ph.D. has vitiligo herself and is a licensed psychologist specializing in stressful events and experiences. Learn more about her here.
Charity Nyawira is a copywriter at MyHealthTeams with experience researching and writing about a wide variety of subjects in health care. Learn more about her here.

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