Last Updated on 29th June 2022 by Caroline Haye
You are not alone: Trisha’s story
If you or a loved one are growing up with vitiligo you are not alone, even if it sometimes feels like you are. An estimated 70 million people around the world are living with the condition. And roughly 20 – 35 % of vitiligo patients are children. Yet relatively little of the information and support online relates specifically to under-18-year-olds. And, although I clearly remember how it felt to have vitiligo as a child and adolescent (see How My Vitiligo Started), it has been a ridiculously long time since I was in that category myself. So I have enlisted the help of someone who is actually qualified to describe what it is like growing up with vitiligo in the 21st century. Allow me to introduce you to Trisha…
A heart-warming message
Trisha, a high school student from California contacted me a month or so ago with the following heart-warming message…
I am a rising senior at a high school in California and was diagnosed with vitiligo at the age of five. Being an Indian with dark skin, the white patches around my entire body were very highlighted. I was bullied for most of my elementary and middle school years. But, after growing and discovering various blogs including yours, I realized I was not alone in this battle. I wanted to ask if there was anything I could do to help others struggling with this skin condition, whether through any volunteer organizations you have heard about, any blogs where I can post… Or any sort of help I can be for others. Let me know if you are aware of anything I can do…
Since Trisha is still a few months short of her 18th birthday, she has found her options for joining relevant forums and volunteer organisations limited. But, with the consent of her mother, she readily agreed to share her story in this blog. And I am so glad she did because I suspect there are hundreds of thousands of children and teenagers out there who are going through the same challenges she did and wondering if they are the only one.
As you will discover, Trisha’s journey with vitiligo started at a young age. And it has impacted her entire childhood and teens to date. No doubt her experiences and feelings along the way have played a part in her becoming the thoughtful, kind and compassionate young woman she clearly is today. And I can’t think of anyone better equipped to write about growing up with vitiligo. So here, in her own words, is Trisha’s story (so far).
Diagnosed with vitiligo at five
“After just a couple of years into this world, white patches started appearing on my skin around my eyes, elbow, and knees. As I grew older, the patches began to grow and became more apparent. My mom, confused about what was happening, took me to see a dermatologist. And there I was, a five-year-old girl diagnosed with an autoimmune disease, generalized anxiety, and last but not least, vitiligo. All I remember from that day was getting a lollipop at the end of the doctor’s appointment, unaware of the challenges my life had for me ahead.
“My great-grandfather had vitiligo, so there are chances this condition was passed down. Still, another theory we have as to what caused my pigment loss is a combination of both emotional stress and an autoimmune condition.
“When I was diagnosed, I had no initial reaction as I was too small to understand what had happened to me that day. But as I started to grow older I felt extremely alone. People started bullying me and started giving me looks, which meant I began to hide and became highly introverted.“
Bullied at school
“As I grew older, my classmates began to call me contagious, stare at me, and isolate me for everything. I had become a weird kid because of these patches on my skin. Hearing names like “cow” or “Shamu” (from SeaWorld) screamed at me during recess had become the norm for me. As time went on, I became extremely closed and introverted. I would hide all my patches from my classmates, my family and myself under clothing – I was so embarrassed.
“I continued living in fear of strangers and the judgements they carried. During sunny weekends, rather than going to amusement parks or picnics, I would stay in my room where the AC was on, entirely covered in clothes.
“Looking back now, I can see how my journey with vitiligo has impacted on my choice of everyday activities. I love skiing, running, and cooking/baking. With my condition as a kid I would take part in more solitary hobbies. But as years passed by and certain events occurred, I began gaining confidence and enjoying team sports and interacting with others.”
Supported by family and close friends
“The reactions of family and friends were extremely kind. My mom and aunt were both highly stressed when I was diagnosed. But they supported and encouraged me throughout my entire childhood. They never let fears for my future get to me, which I am forever thankful for.
“My mom has been my biggest support, inspiration, and companion. She inspires me to have courage and confidence, and never shies away from supporting me. She helped me at every moment of my life and has always been there for me.
“My mom took me everywhere, hoping to find a cure for this condition. We went to numerous dermatologists, both in California and in India. And finally one doctor said he had a treatment and promised pigmentation would come back. But it was an ayurvedic medicine which I had taken for years with no results. So, after going back and forth with numerous dermatologists for years, I was prescribed Protopic and Mometasone, which worked wonders. And, after five years, most of the patches began to shrink slowly.“
Dealing with the reactions of others
“As I have grown older, I have often been asked the question, ‘What were people’s reactions to your skin like?’. The answer I always used to give was, ‘Oh, people would just stare, and sometimes I would get one or two laugh at me, but it wasn’t too big of a deal’. But looking back now, my reply today would be different. I think I actually tried to find people’s reactions to justify that I was weird and should cover-up. In fact, I would make up people’s reactions in my head and tell myself things like, ‘This is why you should wear the full pants and hoodie.’ I would try to find justifications for not having self-confidence, whether others had a reaction or not. So I was projecting onto them what I felt about myself, which is the worst thing that someone with vitiligo could do.
“Having vitiligo has significantly changed me as a person. I have become stronger and gained the ability to stand up for myself. The worst thing was going through bullying at a young age. Although those experiences taught me a lot, they severely affected my mental and physical health through the years. But one of the good things about having vitiligo is the sense of community. The moment I meet anyone with vitiligo, I have an instant connection with them. We both know and understand the struggles we have both been through and respect each other for it.
“Things that have helped me gain confidence and courage are joining support groups, reading blogs, and just talking about it. Trying to ignore the fact that you have vitiligo or being embarrassed about it will just hurt you more.”
A bright future inspired by vitiligo
“For my future I hope to be part of the healthcare team in any way possible, and vitiligo has been a big influence in making this decision. I had always had great nurses and doctors who always took care of me not just physically, but emotionally as well. So I would love to be able to impact someone else in that way in the future.
“For me, writing this blog and joining vitiligo support groups were critical steps for my recovery. I had to start being able to feel comfortable in my skin. It took me thousands of tears, and I hate to see other kids with vitiligo go through this. Bullying is highly prevalent globally, especially among little kids with vitiligo, but it shouldn’t be normalized.
“If I could offer any advice or inspiration to others with vitiligo, it would be to be comfortable in your skin. It took me years to be able to say this myself, but remember, you are amazing. Join support groups, read/write blogs, and never hide (from others or yourself). And in the end, don’t forget to smile. Smile at those that stare at you and try your best to have a genuine conversation to help them understand this condition. And make sure to smile when you see yourself in the mirror.“
