Say hi to Gina again.
"Hello everyone! My name is Gina, I am 22 years old, from Sacramento (Northern California) and I have Lamellar Ichthyosis. As much as I like to say that having Ichthyosis is not one of my major identifiers, I have found that especially as I am about to graduate with my BA in Psychology and go on to do my Masters in Counseling degree, that this genetic disorder has influenced my life more than I realized. Like most who live with Ichthyosis, I have faced my fair share of bullies and stupid remarks/questions and I still do; however, at 22 years old I have become an expert at reacting to what is said depending on the situation. Even though I dislike being confronted about my disorder, I can see where it has also been a blessing in disguise. On one hand, I believe I may have chosen to not have been born with Ichthyosis, but on the other hand, if I had known what kind of person it would shape me into and how it would work in my life in so many positive ways, I may have had a change of heart.
Having a visible disorder can also be a positive thing for many reasons. One of these reasons is that it forces you to socialize with others and teaches you not only to accept diversity, but to embrace it. It can be annoying when people ask us about our appearance (I know I sometimes don’t appreciate it), but it can also instill in us a piece of wisdom most people never really grasp and that is the notion that most people are good at heart. I know it sounds hokey, but it’s true. If I look back on the experiences I’ve had where I was asked about my skin, I remember more of the interactions as positive ones in which I educated the person or in which this person was kind or even complimentary of my appearance and/ or personality. We also learn to embrace how beautifully diverse humankind is. Personally, as someone with a visible difference, I have come to identify with others who have visible differences whether it’s genetic, ethnic, religious or otherwise. I do not discriminate! People are people and humans are humans. We are all unique in our own ways and that is what makes us so interesting (Yeah I know, spoken like a true psych. major haha).
For those of you going on to college or entering a new social circle: Don’t be afraid to talk to people and when the timing is right, don’t be afraid to open up about having Ichthyosis. I have learned that about 99.99% of the people who I have done this with, respond positively. Having this condition has been a challenge and has been very frustrating at times. Some days I look in the mirror and wish I could just have normal skin so I could wear that cute pair of shorts without getting weird stares. Sometimes I wish I could just go a day without a shower without going crazy from the discomfort. But you know what? Despite these aspects of living with Ichthyosis, I see that with these challenges come with some of the most incredible experiences."
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