Ready to get real? Learn where to start

Do you or your loved one experience a range of emotions about vitiligo? You’re not alone. Vitiligo can make you feel many different ways at any given point and it’s important to share your point of view about it.
Expressing your feelings and emotions can make a real difference for you, your friends and family, and other people living with vitiligo. It’s also a great way to make sure you get the support you deserve from your healthcare provider.

Use the sliders below to indicate how you currently feel about living with vitiligo. Then read below for some tips on where and how you might want to talk about it.

Let’s start the conversation

Sharing your honest perspective about vitiligo can be uncomfortable at first. But expressing even just one emotion may help others understand what you’re going through. It’s important to talk openly and honestly with the people in your life—from your friends and family to your healthcare provider—so they may offer you the support you deserve.

- WALKENIA & JOSHUA

Embrace your family and friends

Real talk—it can be hard to express how you’re feeling to your family and friends. Whether you naturally tend to keep your feelings in, or simply don’t want your loved ones to worry, being hesitant is normal. Just try to remember that they are the heart and soul of your support system and it could mean a lot for them to know how you’re feeling. Talking to your loved ones about your condition and explaining your Points of Vitiligo could help them provide the support you deserve.

Does a loved one have vitiligo?

Be sure to keep the vitiligo conversation going. Sometimes it may be uncomfortable, but it’s important to give them the chance to express how they’re feeling. Let them know that their experience matters and is worth sharing. There’s a community here ready to help support both you and your loved one, no matter how they’re feeling about vitiligo.

When you’re ready to open up with family and friends, consider these talking points:

Tell your family and friends:

  • How you’ve been feeling about your vitiligo lately (don’t be afraid to be honest)
  • What you need from them to feel supported
  • What you know about vitiligo (it’s an autoimmune condition, it’s not contagious, etc.)

Ask your family and friends:

  • To share their experiences with having a loved one with vitiligo
  • What they’d like to know about vitiligo and your personal experience
  • To be advocates for you and the vitiligo community

Your care team—tell it to them
straight

This is a big one: You’ve got to be honest and open with healthcare providers because it may be the only way they really know what’s going on. Don’t say you’re good if you’re not good. Tell it like it is and they'll be able to work with you to manage your vitiligo together. Remember, you can start and lead the conversation about your vitiligo at any time.

If you haven't seen a dermatologist* about your vitiligo in a while, or haven't seen one yet, think about scheduling an appointment. With this tool, you could virtually connect as soon as today.

CONNECT WITH A DERMATOLOGIST

*Incyte has engaged Populus, a telemedicine marketplace, to enable patients to consult healthcare providers virtually. All providers make independent prescribing decisions and are not paid by Incyte.

When you’re ready to see a healthcare provider about your vitiligo, consider these talking points:

Tell your provider:

  • Any new areas where vitiligo has popped up or new spots you’ve noticed
  • The emotional or mental impact that vitiligo may have had on your life recently
  • Any other symptoms (physical or emotional) you may be experiencing

Ask your provider:

  • How can we work together to better manage my vitiligo?
  • What’s new in the world of vitiligo research?
  • What can I do to protect my skin?
 

With our dermatologists, we should focus more on the mental health aspect and not just the physical nature of the condition.”

- Mobola
 
 

Get social

Social media is one way to find other people with vitiligo and, if you feel up to it, share your own perspective. Hearing from others may help you feel less alone, and sharing your stories may help you feel heard and understood. Use the hashtag #PointsOfVitiligo to join the conversation.


Advocacy groups—in your corner

If you’re looking for additional support, check out these advocacy groups. They provide helpful information about vitiligo. Incyte Corporation is not affiliated with these organizations but has provided funding for some of their educational programs. This is not a complete list of organizations within the vitiligo community and being listed here should not be considered an endorsement of any particular organization.

Make your voice heard

Through the Incyte Dermatology ADVocate Network, you can share your vitiligo story and help inspire others on their journey.

SHARE YOUR STORY