#Fearlessspots

Photograph by Caren C. Carlson

 
 

Ramona was diagnosed with vitiligo in 2008 and is sharing her story and facing her fear of going without make up in this #innerview

Read our exchange below:

Who were you before vitiligo? Describe your general outlook on life? What did you enjoy doing? 

I was diagnosed with Vitiligo on April 15th 2008. I was 20 years old and a sophomore at The Ohio State University. Before being diagnosed, I was your typical college party girl that still hit the books but had a crazy social life and circle of friends. I was the girl that danced the night away, went home and studied in the morning. When I look back on who I was then, I can honestly say I was extremely vain. I believed that only looks mattered. I didn't experience any spiritual, or mental growth because of the mentality I had before my diagnosis.

What was your emotion the day of the diagnosis? What emotions do you remember feeling?

The day of my diagnosis was a day of denial. I had an appointment on April 15th at 10:30 AM at one of the top dermatology centers in Columbus, OH. My dad drove from Dayton to accompany me not only as my dad, but also as a physician. He was definitely more nervous than I was. I wasn't nervous because at the time I only had one very small spot above my right eyebrow and 3 spots on my stomach. To me it wasn't a big deal because it was something I could easily cover up.  I also thought that maybe it was just a chemical reaction to a creme I was using and that was what I was hoping it would be. 

The doctor scanned a UV light over my spots and confirmed that it was indeed Vitiligo. My dad cried and it was extremely emotional for him as a parent. I was STILL in denial. Even when the doctor said it COULD spread and that Vitiligo can be extremely unpredictable and stress is a huge trigger for it. I felt angry and asked myself what I could have possibly done in life to be deserving of this. Why did it have to happen to me? I still ask myself those questions years later, but in 2008 they were questions that a 20 year could never understand.

So I was still in denial of having Vitiligo until October 2008. It wasn't until I saw it spread on my face and saw little spots start to form on my clavicle and chest that I started to get nervous. By December 2008, I had a white patch that extended from my forehead to my nose on the right side of my face. My right eyebrow and eyelashes also turned white. It is almost as if it happened overnight but it didn't and I felt completely disgusted with myself and mortified. I felt incredibly insecure and I felt ugly above all.

I was given treatment options such as steroid cremes, excimer laser, and UVB phototherapy which gave me hope. I tried it all, but after countless weekly treatments that resulted in burns, skin peels, itching and a loaded bill, I was left with having to just deal with what I have. I had no choice but to.

Describe your fears.

When I decided I needed to deal with it, was when I also had to face my worst fears. Would I ever get married? What man would want to deal with what I have? How could people find me attractive? How would I work? What about the stares? Children pointing at me. The faces made by others that just cast judgement on me was what killed me. 

My biggest fear was getting depressed and in some ways I was. I turned to food and I gained about 25 pounds. I was extremely moody and resentful to the people I loved the most. I hated seeing my mom so upset and distraught over my emotional state. It was as if I made my moms biggest fear come true and that made me even more upset but that also became one of the biggest turning points in my journey. I would rather make my parents proud of my dreams and goals then to have them see me upset, depressed and withering away. 

What has been your most treasured learning in this experience?

Slowly but surely, I came to my fucking senses. I remember crying to my sister on the phone one evening, it was the summer of 2009 and I was having a low moment about my skin (had about 5 a month back then but this moment specifically was the last one for a long time). I just remember bawling my eyes out and I ended the conversation with : 

I don't care, spots and all, I'm STILL CUTE!

 I claimed it. I claimed my spots I claimed my beauty, I claimed my inner strength. I fucking claimed the shit out Vitiligo.

Whatever imperfection you have, whether it is physical or emotional, claim it, own it, and use it. Don’t let it run you, rule over you or drive you away from being what you are meant to be in life and in this world.

Describe your definition of confidence? What would it feel like to walk in public without a care about what anyone thinks? Do you think you could ever feel that way? 

My definition of confidence is being comfortable in your own skin without any concealing, without any hiding. Owning your natural beauty but knowing your inner beauty is what shines the brightest. I cant say I'm all the way there but I'm closer to it than ever before. Walking outside with no make up on and not caring about what anyone thinks is a sign of overcoming a certain fear. Abolishing your care for others opinions of you only makes you greater. At the end of the day, only you know what makes you happy, who can make you happy and how you can be happy. 

We live in a world that is superficial, but deep inside you have to have a strength that supersedes all of that noise. Looks never last, but a personality, a core faith, and an amazing support system will make you feel unstoppable.

Do I feel unstoppable? Yes. I have an amazing, amazing, AMAZING family that has supported every decision I have ever made, an amazing man who has shown me that love can happen to a girl like me and prefers me without makeup. A group of fierce friends that not only exude confidence but have confidence in me. My support system is a group of my biggest fans and the mirror I can't ignore. My faith instills power and strength in me, something I never took seriously before but it has guided me through my hardest times and has made me stronger. So in the words of Yah, I have become a better woman. And lets be honest, I'm the cutest fucker you will ever meet in your life because I'm me!

I have my down moments but I'm human and  I am entitled to them. When I was first diagnosed I had down moments about 5 times a month. Now as I get older, wiser, and more comfortable, I will have a down moment twice a year. It's healthy. It's healthy to cry, scream, meditate and write your emotions down. When it's all said and done you realize how grateful and thankful you are of everything in your life. It's a daily reminder of the love, positivity and the compassion that is surrounding you.

If you can tell someone in a similar situation what NOT to do, what would you say? 

I would tell them to NOT give a fuck what others think about you. I would also tell them to NOT push away the people closest to you because you are ashamed, embarrassed, and disgusted with yourself. The people who are meant to be in your life will stay, empower, and embrace you for who you are in your natural raw state. Look at this as an opportunity of weeding out the bad energy and embracing the good.

Do you believe that your courage can inspire?

My courage didn't happen overnight. I used to be so sensitive and had no balls whatsoever. It took time. I hope people can learn from my journey and be inspired by it. I would want someone to look at me and know right off the bat that their opinion of me will not change me because I control what can change in me, what can inspire me and what can make me a better person. That's the type of courage and confidence everyone should have.

What hashtag would you want people to use in support of you? 

Fear. less. spots.  #fearlessspots