Skin disorders are not an easy thing to live with. They open you up to bullying and all-consuming insecurities.
I have a form of Ichthyosis Vulgaris that usually accompanies those with eczema and various allergies. Symptoms vary from person to person, but my skin has a pattern of dark, scaly skin on the legs, back and arms.
Ichthyosis Vulgaris is an inherited skin disorder in which dead skin cells accumulate in thick, dry scales on the skin’s surface due to the slowing of the skin’s natural shedding process. This creates a buildup of protein in the skin. As the name suggests, it is not pleasant at all.
Most family doctors shrug it off as extremely dry skin – as mine did when I was eight – but not before criticizing my parents and me for not delving more into moisturizing and hydration. Many of my relatives advised me to exfoliate more often. Others brought over cream that allegedly worked well for people they knew. While many were generous to offer their help, it made me feel worse. Since my symptoms appeared to be more cosmetic than anything else, my parents simply opted not to pursue medical treatment.
As a child, I disregarded the disorder. Given that I was quite the tomboy, it was easily covered up by pants and sweaters. But this became harder in high school. My friends wore dresses and shorts in the summer time while I stuck to tights and jeans. I was seen as modest, but in reality it was my insecurities that inhibited me from wearing more revealing attire. I can fill pages with the incidents of bullying and awkwardness that ensued after I wore my first dress to my elementary school graduation. My insecurities were so severe that they hindered my love of sports since they required me to wear shorts.
The hardest part of living with this condition is living with it alone. As much as my friends and family tried, there was no one to experience this with me. They were not living with this condition. They did not cringe at the thought of shaking people’s hands because of their palms were once compared to sandpaper. I was all alone.
I was not diagnosed with Ichthyosis Vulgaris until I took matters into my own hands. I surfed the web in search of a different diagnosis after Googling “scaly skin”. Thankfully, there were several forums and blogs dedicated to sharing tips and experiences. I brought my research to my long-time physician who finally concurred with me and referred me to a specialist.
I am not advocating self-diagnosis because God knows how many times I’ve accessed the Symptoms Checker from WedMD with a cold – and ended up thinking I’ve contracted the mumps. However, these forums and blogs provided insight from real people who were going through the same issues. It was the first time I felt as if I wasn’t alone in this.
It took me almost 18 years for me to be comfortable in my own skin – literally. A large part of it can be attributed to online communities with people who have shared their stories. This article is intended to share my story and to extend a hand to those in the Tamil community who are also living with Ichthyosis Vulgaris. I want you to know that there are resources out there to help make it manageable. You are not alone. I got through it. And so can you.
