Q: Do you have any other medical conditions besides VSS?

As a child, I was diagnosed with Autoimmune Dysregulation. I have also had Erythromelalgia since childhood but was formally diagnosed with it in young adulthood. The two are interlinked. Although my Erythromelalgia never improved, early treatments with corticosteroids offered temporary relief for some of my autoimmune issues. Unfortunately, I developed Cushing’s Syndrome as a side effect of the corticosteroids, which caused significant physical changes and continued discomfort. My body was noticeably swollen, bright red, and in pain. Facing bullying and harassment regarding my appearance, I tried explaining that I was battling medical issues in the hopes that the individuals would stop. Some eased up while others intensified their behavior. Finding limited empathy, I decided to keep my struggles private as I grappled with my health issues and societal reactions to my appearance. 

During this time, I couldn’t grasp why people were so cruel and judgmental. I yearned to be “normal,” free from my medical issues, which I thought would solve everything. Juggling school, homework, extracurriculars, and managing my health was overwhelming. I struggled to keep up academically and socially. Additionally, many doctors expressed surprise at my condition, remarking that I was “too young” to face such health issues. This reaction, though not based on scientific reasoning, deepened my sense of feeling like a misunderstood anomaly.

The mix of physical pain and emotional stress took a toll on my mental health, leading to anxiety and depression. The unwavering support of my amazing family and friends was crucial during this time. Opening up to them showed me that there are people capable of empathy, kindness, and understanding. I soon found a physician, who embodied professionalism, scientific knowledge, and benevolence, to help me navigate my health challenges more effectively. After stopping corticosteroid treatments, my Cushing’s Syndrome resolved, and some autoimmune symptoms became less severe, though I continued to struggle with persistent Erythromelalgia. In 2015, I experienced the sudden onset of Visual Snow Syndrome (VSS), which added a new and extremely complex layer to my ongoing health journey. I developed Post Traumatic Stress Disorder (PTSD) after my harrowing experience with VSS.

My Visual Snow Syndrome Journey: 

• TEDx Talk – What Is Visual Snow? Transforming Anguish into Action
• Backstory – How/Why I Founded Visual Snow Initiative 

My experiences taught me profound lessons about the unpredictability of life and the challenge of fitting into societal molds of “normalcy” and health, especially as a young person. Facing bullying and judgment, I learned a critical truth: going out of one’s way to make unsolicited cruel remarks or harmful assumptions rooted in superficiality, personal biases, and stereotypes, says far more about the person making the remarks than the person they are targeted at. Whether the person is aware of it or not, their compulsion to disparage others is a projection of linear thinking, close-mindedness, ego, insecurities, ignorance, prejudices, and personal opinions. They are not rooted in fact, objectivity, or science; they merely reflect the personal beliefs and biases of the beholder, not the truth of who we are. This realization empowered me to define my self-worth not by physical conditions or societal perceptions, but by the strength of my character and my actions.

My life may have been “easier” without medical issues. But I ultimately accepted the only body I have and chose to make the most of life despite any limitations. Although they may have made me a bit more cynical, these experiences exposed me to the realities of life from a young age. I personally do not believe everything happens for a reason, but I do believe that if you so wish, you can learn and gain insights from everything that happens to you. Recognizing that adversity, both physical and emotional, are inevitable in life, especially with chronic conditions, I have learned the importance of resilience and being kind to oneself. If life knocks me down, I may feel temporarily defeated, which is completely okay and understandable. During difficult times, if life allows, I will try to prioritize my well-being and do whatever else I need to cope. But ultimately, after getting knocked down, I always choose to get back up. I realize that my circumstances will certainly never change unless I try to change them. It is possible I may try and fail, but I also might succeed. However, failure is guaranteed if I do not try at all.

Taking action may not only resolve or improve my problems but it may also help others and catalyze widespread positive reforms. This mindset enables me to rise above adversity and turn pain into being proactive. While I cannot control unpredictable challenges that arise, I can control my perspective and response to them. This mindset of resilience and proactive action fuels my passion to empower others and advocate for systemic improvements in healthcare. My journey has deeply motivated me to champion education and positive reforms in physical and mental health.