Or, maybe, “raise your hand if you’ve ever felt like an outcast because of your skin’s appearance” - personally, I can raise my hand to both of these prompts. Yep, that’s me in the image above; when I was young, around kindergarten to be exact, I developed vitiligo, a semi-rare skin condition that affects roughly 1% of the world’s population (1).
I may be upfront with it now, but trust me: I wasn’t always. There were many times throughout my youth that I felt stressed, embarrassed, and downright terrified to expose my abnormal skin appearance, even going so far as to swim with a t-shirt on for longer than I’d like to admit. Tank tops? Halters? Never heard of her. Anything exposing the vitiligo was quickly stashed in the back of my closet. Before I was old enough to wear makeup, I avoided looking people in the face so they wouldn’t notice the big, white splotch next to my eye (I did go through a phase in my teens where I’d cover the spot with make-up, but that didn’t last long due to inconvenience/self love practice. Here’s a few options if you’re interested, though!)
First appearing on my back, leg, and face, my vitiligo has slowly shrunk near my eye over the years, but remains the same everywhere else to this day. The burden of the painful whispers and prolonged stares, though? Those will forever remain deep in my psyche.
Luckily, as I’ve gotten older, my confidence has grown as well; I learned more about what’s happening with my skin, took precautions to prevent further damage (let me tell you, vitiligo sunburns are NEXT LEVEL), and worked my way up to openly destigmatizing this often misunderstood condition amongst my friends and peers. Today, Mirra Mavens, I aim to do just that with you all - if you’ll have me, that is. Let’s discuss.
Vitiligo is classified as an autoimmune disorder, which is when your immune system attacks its own healthy tissues and organs by mistake. In vitiligo, the pigment cells, or melanocytes, are susceptible to attack, causing the pale, unpigmented appearance on the skin. Some people with vitiligo have another autoimmune disorder as well, like psoriasis or arthritis. As with most skin conditions, there is no cure for vitiligo, and it is NOT contagious.
There are two different patterns to vitiligo development (2): segmental (focal) and nonsegmental (generalized). Segmental is when the white patches are smaller and focused on one area or side of the body. These typically stop developing after slowly appearing for a few years. Nonsegmental is when the patches are symmetrical on both sides of the body, like in the case of the famous model with vitiligo Winnie Harlow. These tend to develop and change sporadically and at varying speeds over the course of the person’s lifetime. Both types can vary in severity, coverage, and size, depending on the person. You’ll typically see patches of vitiligo on the face, hands, neck, and skin folds, although it can develop anywhere (I have a small patch on my left leg, for example).
Winnie Harlow / Instagram
It’s still unclear why the immune system attacks its own healthy skin cells; however, the presence of two genes in particular, NLRP1 and PTPN22, is consistent across all cases of vitiligo. It’s not known to be hereditary, even though some suggest that if you have a history of vitiligo within your family (or another autoimmune disorder) you may be more susceptible to developing it at some point in your life. Some people, like myself, develop vitiligo at a young age, while others report their first sign of patches closer to their twenties.
The story behind what causes vitiligo development is still being researched, so there isn’t a specific root to trace it back to just yet. However, experts have noted that severe sunburns/cuts, toxin and chemical exposure, and high levels of stress were prevalent at the time of diagnosis. In general, genetic and environmental factors are suspected in many cases of this mysterious skin condition, with science working to identify more.
Depending on how much of the skin is affected, there are a variety of treatment options. Luckily, besides being more susceptible to sunburns due to a lack of pigment, there are few physical vitiligo symptoms. However, I want to first address one important aspect: the toll on your mental health.
For a long time, I struggled heavily with my insecurities - I folded into myself in social settings where my patches were on full display, like pool parties and outdoor activities, and didn’t find a sense of self with my diagnosis until much later in life. Had I known to seek mental health guidance early on, I may have been able to cope with some of the harder days just a little easier - and I’m not alone in my struggle. Many people with vitiligo report feeling low self-esteem, depression, and a generally lower quality of life.
With the birth of Instagram, the world is truly your oyster. If you’re struggling with maintaining a healthy relationship with your appearance, try checking out pages and hashtags revolving around vitiligo - here’s a great list to start with. Seeking therapy is extremely helpful as you navigate what’s happening on your skin as well - having an outlet for your anxieties and feelings is my number one suggestion for coping with this condition. Eventually, you can feel confident in knowing that you’re beautiful exactly as you are; it just takes time, so please be gentle on yourself.❤️
Aside from the mental toll, if your condition is causing other problems - like consistently severe sunburns - there are a variety of pigmentation options to choose from. First and foremost: WEAR SUNSCREEN. Your skin is extremely sensitive to sunlight due to the lack of melanin. Although it can be frustrating to have to cover yourself up more than you’d like, you’ll be saving yourself from unnecessary inflammation and redness in the process, so lather it up and cover patches with breathable, comfortable clothing.
Interested in exploring medical remedies? Visit the doctor. Once a professional deduces the severity of your condition, they can prescribe a number of treatments to address your vitiligo, such as topical creams to restore the melanin (aka color) in your complexion, or oral medications to accomplish the same outcome. They may also prescribe laser treatment or light therapy, which entails taking a pill followed by exposure to UVA light to restore your skin’s natural pigment. However, you may experience nausea or burning as a result of this particular treatment. In more extreme cases, you may seek skin grafting (replacing the white patches with healthy pigmented skin from other parts of your body) or micropigmentation (the process of tattooing pigment onto your skin, although this is best for small areas).
No matter what you choose to do, and I can’t stress this enough: being happy with who you are is number one.
Vitiligo is unique in so many ways; with a lack of physical side effects or clear causes, it can be easy to internalize the emotional effects of coping with a relatively unknown condition. I know firsthand just how confusing and isolating it can be when you don’t feel comfortable in your own skin, or when you have all eyes on you followed by constant, bewildered questioning. However, there’s a way to flip the script: vitiligo is, essentially, a permanent tattoo; something that’s completely unique to you, and something to be proud of. I try to wear mine as a badge of honor and do my best to alter the little voice in my head telling me it’s “weird” or “different”. Although it takes time and work, you can begin to feel this way, too; there are communities of people just like you waiting for you to join them and share in your experience (like me!). Oh, and don’t forget to stock up on that sunscreen, bb.😉
Written by Adrianne Neal
