Vitiligo is a disfiguring skin disease that is harmless but is still very misunderstood by people who are unaffected by the disease. Although vitiligo is common, many people have never heard of the disease and the burden often falls on the affected to explain what vitiligo is and isn’t. Many people long to be able to be in a group and not have to explain why they look different from everyone else, why their skin is two different colors. Vitiligo is often mistaken by others as scars from burns or other horrible skin trauma such as cancer.
People who have vitiligo often desire to be around people who don’t ask questions and who understand what vitiligo is. They want to be surrounded by people who get it, don’t stare, and can relate to what they are going through. Being around other people who have vitiligo can be a great support system for people with the disease and provide a safe outlet for them to express themselves and what they are going through.
The emotional and mental impact of vitiligo can be difficult to manage. Because this genetic, autoimmune disease causes such visible symptoms, confidence and self-esteem are often negatively impacted by vitiligo. This is especially true with preteens and teenagers who may be more susceptible to bullying or have a hard time fitting in with their peer groups because of their vitiligo.
Luckily there are support groups for people with vitiligo, as well as family members such as parents with children suffering from the disease. Most major cities offer in-person support groups, but there are many options available online that can connect people all over the world.
Coping with Vitiligo
A change in the way someone looks can be emotionally difficult for them. Vitiligo can result in having to change your lifestyle or the way you dress to protect your sensitive skin from UV damage from sunburn. Feeling embarrassed, depressed, or worried about your vitiligo is common and nothing to be ashamed of.
The first step to coping well with vitiligo is to find a doctor who is both knowledgeable about vitiligo and the current treatments, as well as compassionate. As a patient, being comfortable with your doctor and asking questions is important. Both your primary care physician and your dermatologist should be educated on vitiligo and the signs of depression or anxiety so that you can be treated for the emotional and mental side effects of vitiligo.
The second step to coping with vitiligo is to realize that as/if the disease spreads to extremities and/or face, your lifestyle may need to change. Skin affected by vitiligo is much more likely to burn, even in conditions that would not normally elicit a sunburn in most people. Skin that is not affected by vitiligo will still be able to darken which will create a deep contrast between the different patches. When you take good care of your skin by wearing sunscreen daily and covering your skin as much as you can, you will have a much easier time coping with vitiligo.
Finally, to cope with vitiligo joining a support group is something everyone should consider. Being a part of a support group not only gives people with vitiligo a chance to talk about their experiences, but they can also learn about new treatments and research that is happening. Being a part of the vitiligo community keeps patients more informed and better able to make decisions regarding their healthcare. Because vitiligo is a known autoimmune disease, people with vitiligo need to be ultra-aware of their health and how vitiligo and other conditions may be affecting them.
Not everyone is comfortable meeting with people in person, however, which is why there are many online support groups available. Message boards are a great place to find information about vitiligo and connect with people who have the same questions, experiences, and answers that you do.
How to Find a Support Group
If you are looking for in-person support groups for vitiligo, ask your dermatologist for recommendations. If they do not know of any local support groups, you can try checking your local hospital website or doing an internet search for “vitiligo support groups near me” to see if there are any groups nearby. Doing a search like this is also how you will find online support groups and vitiligo message boards. Additionally, we have a list of reputable support groups you can check out here.
Message boards and support groups are also a great place to find information on surveys, clinical trials, and other opportunities to be the first to know about new treatments for vitiligo. If you are not interested in talking with others about your experiences with vitiligo, consider signing up for a newsletter that will deliver breaking news about vitiligo straight to your inbox!
If you are feeling down, sad, depressed, or misunderstood because of your vitiligo or any other reason, make sure to let someone know. Depression and anxiety especially triggered by vitiligo or other health issues can be hard to manage but your doctor and family can help you cope and find a treatment plan that works for you.