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A PARADIGM SHIFT TO VITILIGO AWARENESS

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A Paradigm Shift To Vitiligo Awareness

 Posted on 27th May 2023  4 minute read

Vitiligo Awareness Month is upon us. It is time to prepare to support our community through advocacy centered around love and understanding. It is time to raise awareness from a place of internal battle rather than external beauty. Vitiligo affects people with this skin condition from a much deeper vantage point than feeling beautiful on the outside. Having vitiligo is not simply summed up by being “original.” I am not trying to state that previous and current efforts are in vain, but I am trying to call to action a new way of supporting our community. Vitiligo Awareness has to be about more than sharing photos of our spots. It has to be more than stating we are beautiful. Vitiligo is an internal battle of the soul. We have to start addressing internal struggles. 

When I was first diagnosed with this condition, I freaked out. I went into a depression, and I did a lot of weird things. I also struggled to understand how to exist in the world. I had a catastrophic identity crisis, and when I looked to the online community for support, I received a mixed bag. Some people welcomed me with open arms. Others seemed concerned about their engagement levels. Some people wouldn’t even talk to me. I was running to my new community for support, but I was not getting the vibe that I was welcome, adding to the devastating nature of the identity crisis I was enduring. 

I do not believe anyone intends to leave a fellow vitiligan behind. I think we are all subject to bias. I know I am. I think we all get caught up in the Instagram algorithm. I know I have. Many of us also spent years being bullied, hiding our skin, and feeling powerless against this unpredictable skin condition with no cure. It makes sense that the movement would have a focus on being beautiful. 

Here’s the thing though. Beauty comes when we look inward. By bypassing internal struggles as the main focus, the awareness movement has unintentionally left its kind behind and in the dark. It’s like if you don’t have enough patches, if your patches aren’t visible enough, or if you haven’t reached a place of acceptance such that you are willing to remove your camouflage and model on Instagram, you don’t receive the same level of respect and support. People should feel free to come as they are. Be it fully camouflaged or exposed. People should be able to post about their experiences. What they are going through. How having vitiligo makes them feel. People should be able to express what it’s like to be a human with vitiligo “freely” and without having to “prove” they belong. Do we really have to see a spot to believe someone has it? Do we?! I know I am being harsh here, but it is only because I care. 

The vitiligo community is interesting. It’s interesting because it’s a rare condition that affects a small percentage of the population. It’s also interesting because most of us have never met someone else in person who has it. Perhaps we have. Perhaps they were hiding too. I don’t know. What I do know is that the online community is the hub. It’s the single source of love and truth. If it wasn’t for this online community, I might not know anyone with vitiligo. This online community gave me a family.

So here’s my call to action. For those who have come to a place of acceptance, let us remember that we struggled to accept our beauty long before we did. I think vitiligo pushed us to a point. It forced us to love ourselves as beautiful. It was a requirement for our continual existence. Let us remember internal struggles such as self-doubt. Remember things we endured when we struggled with self-love, self-acceptance, self-assurance, and self-confidence. Let us raise awareness and love for each other from a place of humanity. Not from a place of beauty. Vitiligo is an internal battle of the soul. It comes with turmoil and longing for acceptance. Do we really need to see a patch attached to a vitiligo hashtag to like the photo? Does someone’s profile have to look good for us to respond to them? All I ask is that when you raise awareness, you raise it from a much deeper vantage point than what is external. Show your fellow vitiligan’s love, patience, empathy, and compassion. Love you.

-Emily Krasch

Stay tuned for more upcoming posts from Emily covering more themes relating to vitiligo. In the next feature we will explore further, the importance of allowing our vitiligo community to freely camouflage their skin without judgement, online or in person.

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