Living with vitiligo can be difficult. Trying to support someone living with vitiligo? That can be equally as difficult – and yet so critical to the health and happiness of patients struggling with the condition.
As those living with vitiligo struggle with both society’s reaction to their skin and their own confidence and self-esteem, it’s natural to turn to inner circles for support. Families and friends represent a safe space from staring eyes and judgement and sometimes provide the love that those with the condition can’t even give themselves. The unconditional acceptance of the mothers, fathers, siblings, spouses and friends of those with this disease provides a source of hope and peace in a life-long struggle.
“What would we do without our families’ love and support?” said Denise Blanks, a woman living with vitiligo, in a recent Facebook post. “The world already rejects our spots and skin. Families need to know they are so needed as we journey on this [road with] vitiligo.”
If you have a loved one with vitiligo, here are six ways to be present and supportive.
Respect the journey
For those with vitiligo, the road to self-acceptance can be a long and hard one. No matter where your loved one is on their journey, it’s important to support their decisions. While some may shamelessly flaunt their spots, others may seek treatment or opt to wear long sleeves and makeup to cover their patches. There’s no right or wrong answer, and there’s no right or wrong way of processing the emotions that come with losing your skin color. Regardless of where your loved one falls on the spectrum, be a cheerleader every step of the way. Embracing where they are mentally and emotionally can go a long way to building a safe space.
Learn about vitiligo
If you want to support someone with vitiligo, educate yourself about the condition. Vitiligo is more than a skin disorder; the condition can greatly impact a person’s emotional and mental stability. Yet not every patient finds it easy to share their journey. Vitiligo is often a “silent disease” in that patients don’t always volunteer their feelings, emotions and struggles. Seek out research, stories and voices within the vitiligo community to help understand the condition’s complexity. Reading the stories of others with vitiligo might help you approach your own loved one.
Be a source of encouragement
The visibility of vitiligo can take a toll on one’s self-esteem. The most important piece of encouragement you can provide is affirmation and recognition. Never fail to reinforce the reasons as to why you love them and how much value they add to your life. Help your loved one see that they are more than their skin color and remind them of who they were before their diagnosis. Patches or no patches, the person is the same underneath their skin – sometimes they just need the reminder.
Connect with support groups
When it comes to everyday life with vitiligo, there are some aspects of the journey that only another person with the condition has the ability to understand and resonate with. Yet chances are, since only 1% of the population has vitiligo, neither of you know many people with the condition. Connecting your loved one with a support group – and getting involved yourself – can remind them that they are not alone, even if they feel like they are. VitFriends, a national support group, provides local resources and meet-ups for in-person support. You can also find numerous support communities online, especially through Facebook groups.
Give advice carefully, and listen first
Sometimes, all someone needs is a shoulder to cry on or a pair of ears to be listened to. Yet in an effort to help, loved ones can be quick to offer advice or words of comfort that unintentionally miss the mark. For example, it’s hard for someone with vitiligo to hear you say you ‘know what they are going through’ – because you don’t. If your love one reaches out in feelings of defeat, don’t downplay their emotions or belittle the condition with remarks like, “it’s just a skin thing, you’re not dying.” Although vitiligo is not terminal, the condition is often coupled with deep emotional pain – pain that is real and deserves to be validated. Listen first and attempt to learn from their experiences. A simple, “I’m here for you,” or “That must be tough” might be all they need.
Be an advocate for vitiligo
Ask your loved one if you can support them by being an advocate – or if they want to do something to raise awareness for vitiligo together. Whether you decide to share a personal story or host a fundraiser for research, your actions can mean more to someone than words. It also gives your loved one the opportunity to do something about their skin, instead of sitting around and wishing for change. No matter how you choose to contribute to the conversation and education surrounding vitiligo, your voice matters – especially to your loved one.
If you have vitiligo, how can someone support you today?
Simone Girma is an LA-based communications graduate working for NBC. She’s lived with vitiligo for ten years and has learned how to appreciate the story of her skin – something she aims to share with readers.