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How This Inflammatory Conditions Advocate Learned to Navigate Information Overload

How This Inflammatory Conditions Advocate Learned to Navigate Information Overload

woman with vitiligo smiles at camera

When Emily Krasch first realized she had vitiligo, she was overwhelmed and simply wanted to escape the reality facing her. But over time, her acceptance of the condition grew and she began to see that beauty is more than skin deep. Importantly, she found her tribe of “vitiligo beauties” on social media who have helped her to appreciate the patches on her skin. It was a lightbulb moment. Today, she is happier and has experienced more self-love than ever before because of her journey with vitiligo. Her mindset, confidence and concept of beauty have radically changed for the better. 

Emily sat down with us to discuss her walk with vitiligo, including her path to self-acceptance and the hidden gifts she has discovered. 

Name: Emily Krasch

Age: 33

Hometown: Los Angeles, California

Number of years with vitiligo: 5

LD: Hi Emily, thanks so much for joining us. Can you share a bit about yourself?

EK: I’m a senior technical program manager in the aerospace and tech industry. My favorite things to do are to exercise, write and cook. I’m passionate about writing and enjoy using this skill to share my life experiences to help others. When I’m not working or busy raising awareness, I enjoy spending time with my friends.

LD: You run an Instagram account about chronic health issues including vitiligo and endometriosis. What inspired you to start your social media channel?

EK: I’ve had chronic issues with my body since I was fifteen, but 2020 was a tough year health wise. I was diagnosed with vitiligo, but I was also dealing with endometriosis pain and symptoms. At the time I didn’t know I had endometriosis. In fact, I had never heard of it either. It wasn’t until I was in an emergency situation and needed surgery the next week that I was properly diagnosed. Even then my doctor never educated me on the condition. She never told me it was a full-body disease or that I had surgical options. She never told me there was no cure. Because of this I went into my surgery thinking that they were going to remove the endometriosis and all would be well again.

Then, as I was being prepped for surgery, one of the nurses looked at me and said she had to have surgery six times before moving forward with a hysterectomy. My heart dropped and I freaked out. Six times? I was so confused, but there was nothing I could do about it. I was about to go under the knife.

The day after my surgery I decided to hop on Instagram and search #endometriosis to learn about the condition from others who have it. I found several Instagram pages that were raising awareness about the condition, but most of them were in the United Kingdom and Australia. I laid on my bed scrolling for hours. I felt overwhelmed, angry, and sad. The future seemed uncertain. But most of all, I was mad that no one ever told me I had this condition and that I had to learn about it from people online on the other side of the world. I thought to myself: “How come people in the U.S. weren’t talking about it?” 

Endometriosis affects 200 million people worldwide and likely more because of gender bias and other factors. So why is it talked about so little and why didn’t my doctor prepare me for this? I had so many questions.

Ultimately, endometriosis is by far the most debilitating condition I’ve ever had. I wouldn’t wish it on my worst enemy. This experience has challenged me deeply. I guess you can say I was led by anger, hurt and pain. It made me realize that millions of people share conditions that I have, not just endometriosis and vitiligo, but thyroid disease and more. I realized that I wasn’t alone. I could help others by telling my story while teaching them about the conditions I have. I wanted to make a difference, but I also wanted to stop hiding.

woman with vitiligo
Image of Emily Krasch

LD: When did you first become aware you had developed vitiligo? 

EK: I noticed my first patch under my right armpit approximately five years ago while shaving. I didn’t know what it was, but it wasn’t visible to others so I thought nothing of it. Then, at the beginning of the pandemic lockdown, I discovered white patches had developed all over my body. In a period of two months they had multiplied across my hands, thighs, forearm, face and so on. This is when I started to freak out. I didn’t know what was happening, so I made a virtual appointment with a dermatologist who diagnosed me with vitiligo in March of 2020. 

LD: How did you feel about the diagnosis?

EK: When I was first diagnosed, I experienced a series of ups and downs. I was concerned and embarrassed about it, especially because it was becoming more visible on my face. I broke down a few times with sadness because I didn’t want to look like this. I didn’t understand why this was happening to me. At the same time, I didn’t want to know about it yet either. I wanted to escape reality. 

I know they say you should never over-Google your diagnosis, but since my doctor didn’t educate me, I had to teach myself. I procrastinated for a time. Then, in June 2020 I was sitting in a cabin while on vacation and I looked at the patches on my hands and other places on my body. I just knew I could no longer avoid researching the condition. So I took out my phone and started googling. 

As I began to learn about vitiligo, I quickly became overwhelmed. Discovering that stress, diet, and sun exposure can have a drastic effect on the condition, that there is no cure and the cause is unknown was incredibly troubling for me. I had also read an article that claimed vitiligo was linked to skin cancer, which by the way, it is not. That’s a myth. Nonetheless, it was a lot of information to take in and I was worried about many things. 

LD: I think many of our readers can relate to having information overload when first diagnosed — it’s not a common disease and it can be overwhelming. In what ways has the condition impacted your life? 

EK: Vitiligo has impacted my life in many ways, but the largest impact has been on my perception and definition of beauty. Vitiligo has taught me that beauty is not linear and that it’s not skin deep. Beauty is dynamic. For a short period of time, I would cover my skin with clothes and hats during the summer weather. But I don’t do that anymore. I have also never tried to cover it up with makeup.

LD: It sounds as though you have learned to embrace the changing landscape of your skin. Can you tell us more about how your ideas regarding beauty have evolved since the diagnosis?

EK: Vitiligo challenged me to embrace my beauty and has taught me many new things about the world. I never understood the true meaning of beauty and never had a need to understand it until my patches started forming. I started to wonder if I was still beautiful and what other people would think about me with vitiligo. I became clouded by negative thoughts and struggled with self-acceptance and self-esteem. 

One of the hardest parts about being diagnosed with vitiligo for me was knowing that my body was changing cosmetically, and I had no idea how I was going to look. ⁠ 

I think I struggled with self-acceptance and self-esteem because we grew up in a world that has its own definition of beauty. This was further influenced by superficial standards across multiple industries such as modeling and acting, and across all aspects of popular culture.⁠ The cultural norms of beauty were so ingrained in my mind that it affected my outlook and fostered an unhealthy response to vitiligo. 

However, a few months into my acceptance journey I was introduced to the concept of our bodies being a work of art. That was revolutionary for me. I spent a lot of time observing and learning about my fellow vitiligo beauties and it changed my perspective on the definition of beauty. I think we all struggle to embrace our beauty. The difference for me, and I assume for many others in the vitiligo community, is that my skin condition pushed me to a place where I was forced to embrace my beauty to exist in the world. I was forced to discover my own definition of beauty and challenge my own bias of beauty. I am a better, happier, and more well-rounded person because of my skin. 

woman with vitiligo
Image of Emily Krasch

LD: What words of advice do you have for someone who has just been diagnosed and may be feeling overwhelmed or frightened? 

EK: One of the most powerful things you can do is join a support group or network.

About three months into my acceptance journey, I decided to redirect my negative emotions and to learn about my fellow vitiligo beauties instead. I researched people who developed vitiligo as a child versus adulthood and learned about their struggles and acceptance journey. I also learned how they refer to their bodies as pieces of art. My research taught me a lot about what people with vitiligo go through mentally, physically, and emotionally, but it also confirmed that not everything I read about vitiligo on Google that claimed to be medical facts was true.

Joining the vitiligo community was a groundbreaking experience that played a critical role in my journey toward acceptance. When I started following other vitiligo pages on Instagram, I had joined a global support network and I didn’t realize it. But ever since I joined, I’ve learned so much about my life through the eyes of vitiligo people across the globe. They taught me about their experiences and helped me to discover what was going on with my body. They helped me understand how vitiligo medically affects my body, but also how others in the community have dealt with it and learned to grow despite it. They helped enable me to move forward with this new stage of my life and thrive. The more I interacted with members of my tribe on social media, the more I learned about myself. Most importantly, the more I saw the beauty in others with vitiligo the more I saw it in myself.

Vitiligo and the vitiligo community has forever changed my life, my mindset, my confidence, my concept of beauty, what it means to embrace yourself and so much more.

LD: Besides a radical shift in perspective, what additional gifts have you discovered on your journey with vitiligo?

EK: There are many hidden gifts in vitiligo, but I think for me the number one gift is the intrinsic value it brings to your life. It causes you to see the world differently and you become attached to it. For example, nowadays whenever I watch movies, music videos, and television shows I can’t help but wonder where the vitiligo people are. I can’t help but wonder how long it’ll be before vitiligo is represented across all avenues of popular culture.

Also, I’ve recently found a good doctor who was interested in getting to the root cause of all my health issues. He said he’d be able to get me better and teach me how to manage my illnesses so that I don’t become sicker. You would think that I would have been super excited about this. And I was. But I also thought, “Can I get better and still keep my vitiligo?” That’s such a wild thought to have. I obviously want to get better, but I also don’t want to lose my patches because I’ve become attached to them. When I first started this journey I was so freaked out, but now not only am I learning to love myself and embrace my beauty, I’m literally attached to my skin and I can’t imagine life without my patches.

LD: A sense of community and having a support system in place is so important. As we wrap up, what final thoughts would you like to share with our readers? 

EK: I know it can be a rough and difficult journey. I encourage you to love your body today, tomorrow and always. Remember to be kind to yourself and take your acceptance journey one step at a time as you feel comfortable. You are beautiful just as you are. Say it with me: Confidence is a state of mind. Beauty comes from within. The more I learned to love myself, the more I love my skin.

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