Not everyone is going to like you; don’t let that stop you from letting your true self shine.
As a part of our series about leaders who are using their social media platform to make a significant social impact, we had the pleasure of interviewing Ash Arellanes.
Ash Arellanes is a social media personality with over 317K TikTok followers. She shares engaging and informative video content about her journey with keratoconus, a progressive eye disease. Ash uses her platform to help spread awareness for this underdiagnosed, sight-threatening eye condition and to encourage everyone to get regular eye exams.
Thank you so much for joining us in this interview series! Can you tell us a story about what brought you to this specific career path?
I started on this path after being diagnosed with a sight-threatening eye disease called keratoconus, or KC. I had never heard of it and felt lost upon receiving the diagnosis, so I turned to social media. I knew there had to be someone out there who could relate to me and I also knew KC was something that needed a spotlight. My goal on social media was to spread awareness for this underdiagnosed and progressive condition and to share my experiences to help others who are living with KC. I began by sharing spirited, engaging and informative video content about my KC journey. From there, the number of followers I have increased to more than 317K, which allows me to spread further awareness to a broader platform. I’ll never forget my first viral video and the massive number of messages that came in from people who related to what I was going through. It showed me I wasn’t alone anymore.
Can you share the most interesting story that happened to you since you began this career?
The most interesting part of this journey has been the opportunities that I have had since I first started sharing my story on TikTok. For example, working with companies like Glaukos as a KC spokesperson and now being able to do interviews like this to reach new audiences beyond social media.
It has been said that our mistakes can be our greatest teachers. Can you share a story about the funniest mistake you made when you were first starting? Can you tell us what lesson you learned from that?
There was one time I posted a video that was supposed to be in the popular ASMR style (a sensory method using whispering, tapping and other sounds), but I’m a mouth breather and that’s really all you could hear throughout the video. I didn’t realize this mistake until it already had over 1K views. I deleted it so fast, but looking back I wish I would have left it up for the laughs.
You have been blessed with success in a career path that can be challenging. Do you have any words of advice for others who may want to embark on this career path, but seem daunted by the prospect of failure?
You should NEVER let the fear of failure stop you from trying something you want to do. You should view failure as the first step. My biggest piece of advice is to be persistent and to not give up, especially if it is something you are truly passionate about, and even better if it is something that can help others as well.
Ok super. Let’s now jump to the core focus of our interview. Can you describe to our readers how you are using your platform to make a significant social impact?
I use TikTok to share all kinds of content related to keratoconus and my personal experience with it. Most people don’t realize that keratoconus is a progressive, sight-threatening disease that causes the cornea, the clear outer layer at the front of the eye, to form a cone-like bulge. This leads to symptoms such as blurry or distorted vision, difficulty seeing at night, excessive eye rubbing, frequent headaches and more.
My ultimate goal with sharing my story is to reach as many people as I can and ensure my follower base knows there is help for KC and that it’s okay to seek it out. I encourage my followers to get their eyes checked regularly and let them know I am available to help find resources.
Can you tell us a story about a particular individual who was impacted by this cause?
I am so grateful to have been able to connect with a number of my followers who are all at different stages of their KC journeys, from awareness and early diagnosis to their treatment and ongoing management of KC.
Was there a tipping point that made you decide to focus on this particular area? Can you share a story about that?
The tipping point for me was finally receiving my keratoconus diagnosis after multiple misdiagnoses over the course of about three years. It took so long for me to finally get clear answers about what was happening to my vision, and during that time, my vision continued to deteriorate. This motivated me to do whatever I could to spread awareness for this underdiagnosed eye disease and to encourage people to advocate for themselves with their eye doctors. It is really important to be educated about the signs and symptoms of KC to promote early diagnosis and intervention.
When I was diagnosed, I had never even heard of keratoconus, which was scary, so I started talking about it on social media because no one else really was. For me, it was a no-brainer to share my story with the world, and I knew it would be worth it if I could help even one person in some way. Today, through social media, I have really developed a supportive community for people with keratoconus, in addition to providing easily accessible and digestible information on the disease.
Are there three things the community/society/politicians can do to help you address the root of the problem you are trying to solve?
The number one thing I think others can do is just help spread the word about the signs and symptoms of keratoconus to make it a more widely known condition within our society. If more people know about it, they will be more likely to ask their eye doctors specifically about KC, which could lead to an early diagnosis and prevent further vision loss. TALK ABOUT IT.
Another aspect of keratoconus that needs to be more widely known is the danger of eye rubbing. Rubbing your eyes, gently or aggressively, can lead to the development of keratoconus, as this causes the cornea to weaken and get thinner. Eye rubbing can also increase the progression of the disease for those who already have it.
Why do you think social media in particular has the power to create social change and create a positive impact on humanity?
Social media is incredibly powerful in its ability to create a positive impact on humanity. It allows you to connect with people across the world who are interested in talking about the same things as you, no matter how niche your focus areas or interests may be.
What specific strategies have you been using to promote and advance this cause? Can you recommend any good tips for people who want to follow your lead and use their social platform for a social good?
I have been successful in expressing how they really are. The good, the bad, the silly. That’s the best way to go about sharing a journey. It’s the only way to truly take others along with you, so they can see, understand and feel what you go through. The impact is profound and results in something the audience will really take to heart and remember you and your cause. And in my case, they may even go get their eyes checked!
What are your “5 things I wish someone told me when I first started” and why?
1. How awful I look in grey.
2. To not allow a negative comment to outshine the positive impact or message of something you share.
3. You don’t need fancy equipment to tell your story.
4. Don’t get stressed about numbers. A social platform on an important topic is not about that anyway.
5. Not everyone is going to like you; don’t let that stop you from letting your true self shine.
You are a person of enormous influence. If you could inspire a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger. 🙂
Thankful Thursdays! Every Thursday, everyone stops what they are doing and shares something they are grateful for and why, with whoever is near them — whether it’s a parent, partner, coworker or neighbor!
Is there a person in the world, or in the US whom you would love to have a power lunch with, and why? He or she might just see this, especially if we tag them. 🙂
I would love to meet the inventor of the surgery that stopped my eye disease progression. They are responsible for not only saving my vision, but so many other peoples’ vision too. I often think of how lucky I am to still be able to see my children smile.
How can our readers further follow your work online?
You can follow me on all social media platforms @demi_the_vlog_dog.
This was very meaningful. Thank you so much!
Social Media Stars Making a Social Impact: Why & How Ash Arellanes Is Helping To Change Our World was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.