I HAVE VITILIGO. THIS IS MY STORY & HOW ITS CHANGED ME.

January 26, 2015 Dayka Robinson

Watching your body change before your eyes is really fucking tough.

Traumatic would be another good adjective to insert here. I'm not talking about an ailment you were born with and I'm not talking about pregnancy. I'm talking about literally waking up one day and noticing that the skin on the body you've known for almost 30 years is suddenly changing. Then going to a dermatologist who confirms you have something called "Vitiligo" which has no known direct cause, no cure and an unpredictable prognosis. Up until then, I only knew it as the disease that Michael Jackson, the King of Pop claimed to have. When I left that office visit, I realized that I had joined his ranks. What I didn't realize was how much it would change me... for the better.

It's been 7 years since I first noticed the handful of small, discolored spots just below my belly button. They weren't particularly large, and they weren't extremely discolored either--just a trail of 4 small-ish spots that seemed to appear out of the blue. I didn't think much of them--outside of noticing the inconsistency--and kind of filed it away in the back of my mind. It wasn't until many months later, as I took note that they were getting lighter and larger (and after a bit of frantic Googling), that I got a little concerned. When the dermatologist confirmed the diagnosis...I still remember walking out of that office in a fog. I was uncertain of what to expect...and I was devastated.

Vitiligo is an autoimmune disease. It affects the pigment in your skin by causing your immune system to identify your melanin-producing cells as an "invader" and attack, so that the cells either die or stop producing melanin. The bright side is that there's no effect on my practical, day-to-day functioning & it doesn't cause any internal issues other than skin discoloration. The "downside"? Knowing that it's "just skin", yet still having to navigate a psychological forrest of conflicting emotions that are very real. It's like trying to execute a full spin on a teensy tightrope launched 250 feet in the air--it ain't the easiest thing to manage. It is shocking...and frightening...and depressing to see something visibly take hold of your body that you can't control. And then there are those who minimize this experience because they think it's "just a superficial thing"...which is an incredibly dismissive position to take when it's not transforming your body. What many people don't seem to understand is what the effect of something like Vitiligo can do to your mind: it will have you questioning your own beauty & value, reconsidering everything you think you know about yourself--deep stuff. From my perspective, developing Vitiligo as an adult is extremely different than having it as a child. I have, in effect, lived an entire life in one skin--childhood, high school, college & beyond-- only to develop a new skin as I approached 30. And of course this is what we're supposed to do in our lives-- grow & shed the skin we come to know as a means of expanding more into the people we're purposed to become. But when it's LITERALLY happening before your eyes?? Yikes. It can be a challenge to watch this process unfold and the uncertainty surrounding its progression (not knowing what to expect) used to cause a constant state of anxiety...which did not do much to help my immune system. Those early days were like a merry-go-round I couldn't seem to find my way off of.

For the first few years I was very diligent about staying covered because I was sure that I didn't want anyone to see what was happening to my body. And in those early days it was an easy task--if you didn't see my stomach or the center of my back, you wouldn't have caught a hint of what was taking place. But I pride myself on transparency & felt like a fraud during those years--aware that I wasn't owning my truth yet at the same time, having no idea of how to embrace what was happening. To see it as only a small part of my story and not the entire story. In hindsight and from a renewed perspective, I clearly see how Divine Timing was yet working in the midst of it all. Sometimes I'll catch myself thinking, "I'm grateful this happened in phases--I don't know that I could've emotionally handled losing my pigment any faster than I did.", but then I remember what I know is true--that we are always given the specific wings we need for the individual journey ahead. Because literally & figuratively, inhabiting a new skin changes you. I haven't had 35 years to acclimate to this, I've had 7--and now in year 7, my body doesn't look anything like it did in years 1-3. And I'm not saying that a dis-ease like Vitiligo changes your quality of life forever but yes, it will absolutely change something about your life, especially when it happens to you as an adult. Whether it's for better or for worse is ultimately up to you. In my case, it forced me to let go of how I visually imagined my life would be. And if I'm being honest (which I should be because after all, I AM half naked on the internet!), it forced me to rethink/reexamine who I thought I would be in this life. It's safe to say I considered myself to be attractive. Secure in the knowledge that I was a decent person and just as confident in saying that I wasn't an ugly duckling, either. Yet seeing Vitiligo spread across my body felt suffocating for awhile, being enveloped by something I couldn't control. And by "awhile", I mean years. As you can imagine, hours of perusing pics on Google Images didn't help much in those early stages, either. Because you can get lost in looking at the photos, seeing the possibility of what could happen to your skin without the balance & understanding of the only thing this experience is REALLY requiring of you--to become someone new. In and of itself, Vitiligo makes me different from most people and while different is something we tend to champion when it comes to businesses, personalities, music and fashion, we don't always celebrate "different-ness" when it comes to appearances.

For instance? Sometimes people just stare uncontrollably.

I know that curiosity can get the best of people and they can't help looking at the white spots trailing down my shoulder or sneaking out along the neckline of my dress, but the blatant staring?Even to this day, it can make me feel like the main attraction in a circus. I really don't think people mean to stare in amazement--I believe we all are inherently good--yet when you're insecure about your own body, seeing people fixate on it just magnifies everything that's already under the surface. But in the end, the feelings that come up for me in those moments speak more to the narrative that I believe about myself, and less about other people and what they may be thinking. Knowing this actually DOES make the stares easier to process because it gives me a sense of power to know that there is a major part of my experience that I CAN control. And that, when it comes to me, nothing is ever true until I believe it to be so. After all--this is my journey, my story and I'm 100% responsible for the meaning that I assign to the events in my life. This fact, I own.

When people say things like "it's not a big deal" or that it "shouldn't really matter", I understand that they're intending & wanting to be supportive but here's the thing--when it's happening to you and it's your body and changing your life, it kinda is a really big fucking deal. I walk a tightrope between knowing that I'm not this skin, yet this skin is the first thing you see when you look at me. My brown body now has varying shades of white spots across a good portion of it, and unless we're in the dead of winter, it's not like you could look at me and miss them somewhere--on the back of my legs, in the web of my hands, around my ankles & the tops of my feet. It's only seasonally visible on my face (I use Protopic, a topical prescription to control it) but if you know to look, you'll find it. Does it change the way my body functions? I'm grateful that I can say "no". But there's no denying that it has changed how others see me visually and also, how I show up in the world.

It wasn't until recently that I allowed myself time to really mourn my loss and who I thought I would be. And even though it may have been (admittedly) a superficially concocted self-perception, it was mine--MY idea and MY expectations based upon what I thought my life should look like. But the thing about Vitiligo is this: it's different for everyone, so there's no one way to navigate through this process. It's just not that simple. Each of us have to figure out a way to chart a course that feels true based upon the individual situation. Some people just develop one patch of Vitiligo, or only have it on one side of the body. For others like myself, it's non-segmental (bilateral Vitiligo or generalized Vitiligo) which means it appears on both sides of the body and cycles through periods of starting, stopping & expanding. This means that I have to make my way through an acceptance process each time it takes up more real estate on my body. And in other words, I make peace with my new reality each time it needs to be made.

But here's the good part: It gets better.

It gets easier to face and honor what's happening in my body each time because Vitiligo has undoubtedly made me better, stronger. I don't know if I can truthfully say I'm at 100% acceptance but I know this for sure: I'm not where I was 7 years ago (hell--the fact that I'm putting these pics out here on the webs is a testament to this fact!) Those 3 small dots that appeared below my belly button later spread to my back in a year's time. And from there it traveled to my shoulders, my breasts, my stomach and my face. It was dormant until the end of 2012 when I can only imagine that the end of a long relationship helped it to flair up again--a relationship I ended in part, because I knew I needed to sort through this and do the kind of inner work that can only be done when you're alone. I wanted/needed to find my own foundation and not settle for existing off of the confidence that a settled relationship provides. Or even worse--staying with someone because I didn't believe anyone else would want or love me in my new skin. I loved us both enough to know that I deserved more, and so did he. So I set out on my own to find my center and in time, that's exactly what I found. And time & time again I remind myself, just because my life doesn't look exactly like what I thought it would doesn't mean that I don't have a really good life. 'Cause it is really good (incredible, actually), and I am happy. As they say, there will always be a road that didn't choose us, and for me, the journey I would've had had I NOT developed Vitiligo is that road. What chances would I have taken without this experience & who I would have consequently become without this calling to expand into more? I'll never know. But I've learned that it's okay to mourn that road that didn't chose me and the secrets it held while simultaneously being excited about the road that I DO have. Yes, it's different, but it's also an incredible opportunity to practice what I believe--that things are always working out for my good, even if I can't see it just yet. And because of this core belief, I'm able to move forward knowing that everything--at the deepest level--is as it should be and that my purpose in this life is not diminished because of Vitiligo but instead made perfect through it. This I know for sure.

Vitiligo has caused me to reexamine my beliefs & values--to be clear about who I say I am and the ways that I am/am not showing up like I intend to. I believe in the power of intention and living in personal integrity, which is to honor yourself by being/doing who & what you say you are. This experience has expanded my faith and reminded me of what I know to be true--that I am not this body, but the essence of Dayka is created in my soul...the untouchable, undefinable, perfect, all-knowing Source on the inside. And I don't mean that in a cheesy way but truly, when we transition out of this life, our bodies remain but our souls--the very essence that makes us who we are--are what leave and THAT is what those who remain mourn over. So I continuously affirm to myself that I am not this body, and that everything I need for my journey on this path is already within. I am not devoid of anything, nothing about my life is a mistake, and how my body was created is intrinsically tied to who I'm supposed to be in this world. I don't know that I would be so clear about this truth without having journeyed through this experience.

So in the spirit of honesty, transparency & transformation, I wanted to share this part of my life with all of you. To share my story about a life change that started out so heartbreaking but more importantly, became so transformative in my life. Vitiligo led me to a Paleo lifestyle which has done wonders for my health. It's now a little over 2 years later, and I still don't regret ending my relationship--in a challenging time I relied on my intuition and surprisingly, I'm enjoying being single and relishing the beauty & peace of being alone (alone, not lonely, mind you). I have a career I love. My business is doing really well. Some of my closest friends are people I'm sure I've known in another lifetime. I love where I live. And in general, I'm really very happy with me and the work that I've done on myself. Work that may not have taken place without Vitiligo. I've wanted to write this post for awhile and for many reasons, first as a means of celebrating myself and how far I've come. As a means of sharing a huge part of who I am that isn't as well known. And as a means of inspiring and encouraging someone with Vitiligo who may stumble upon these photos via Google, or this blog post one day in despair (like I did many years ago) looking for something to hold on to, needing to hear that it gets better. Well I'll tell you this: it really does get better...but it's because of the work you do on the inside of you, not on the outside. In so many ways, I never imagined that I would have the life I know today...but in every way, and even because of this experience, it is sweeter. I'm grateful for what I didn't know back then about this journey that lay ahead--it would've seemed insurmountable to the 2007 version of myself.

So the logistics: I have chosen not to wear makeup to cover my depigmentation. I have no issue with anyone who does differently, but the practice for me is about becoming comfortable in my skin and yet staying ever aware that I am not this skin. Will I always feel this way? I can't say with any certainty. But I reserve the right to change my mind later and will do what feels right in the moment. In the meantime, my biggest hope is that I might inspire someone who may be struggling with a challenge or insecurity of any kind--personally or professionally--who finds themselves full of fear and/or doubt. To remind you that God or life--whatever you may believe in--is calling you to be more...to be bigger and better than you are in this moment. And you absolutely can be, if you so choose. It may take time, but your perspective WILL change if you allow it to.

And yes, someone will still think you're hot. (many "someones", in fact) They'll want to date you...love you for how you look now, and how you'll look 5 years down the road. And yes, people may stare, but only because it's different. Not ugly. Just different...and that's okay. And in time you'll find that when you stop looking for the people who are staring, you won't see them as much anymore. And you'll learn that sometimes, the people who are staring may actually be looking because in you, they see the courage that they're not sure they have themselves. So I remind you that in this way, when you tell the truth of your own story and have the courage to shine your own light, you help light someone else's flame and give them the courage to shine too. And that's something worth celebrating. (Albert Schweitzer)

**All images taken by the amazing Angela Murray Morris, who made me feel incredibly comfortable, supported, and excited about this shoot. Eternal gratitude, love & appreciation for you, friend. Xo** **To Nicole Wylie, Antonio, Telisha Gibson, Brady & Rodney...for--each in your own way--allowing me to use your flame to light my own.**