Date: 10/21/2020

Why I hide on Halloween, A Journey of Living with a Visible Difference

by FIRST Member Francine Mondi 

This time of year is filled with so many incredible things like pumpkin carving, apple picking, hay rides, trick or treating (although maybe not this year), but for me this is the only time of year I hate myself and the way I look.. Let me explain, I was born with a rare skin condition called Lamellar Ichthyosis (ich·thy·o·sis/?ikTHe'os?s/). Ichthyosis is a genetic disorder that causes dry skin and scaling due to new skin growing more rapidly and shedding old skin too slowly. The condition is derived from the Greek word for fish. In fact in some areas of the world, it is known as fish scale or fish skin disease. We also have what I like to call a “broken internal thermometer”. I often vary between extremely hot and extremely cold. People with Ichthyosis are at higher risk of infections and overheating. If you think about it, our skin is our largest organ and controls so much of how we feel.

So now that you know a little about me, let me go back to why I hate this time of year. Having a visible difference means everyone notices your disability. They make assumptions, everything from “were you in a fire?” to people thinking I have poor hygiene habits. This is not limited to the fall, however during the time surrounding Halloween, the comments are extremely more prevalent and uncomfortable. Things like “wow how’d you get your eyes to look like that?” Or “cool costume, that skin looks expensive” is heard from the singular daily interactions i.e. servers, cashiers, delivery people, etc. It has gotten so bad that there have been many years where I’ve hibernated for weeks until people return to simply ignoring me throughout their day to day life. Having to hide myself away and make up excuses as to why I wouldn’t be joining in festivities took a huge toll on my mental health. It took me many years to learn to love myself, and at 41, I am still learning every day how my mental health does affect my physical health but I digress.

Why am I telling you this? I share this now because I want to remind everyone that commenting on a stranger’s appearance is not acceptable even if you think something is “cool” or you are trying to offer assistance, it might not be what you think it is and you may be making that people of a painful part of themselves. As a parent to two special needs boys, one who also has ichthyosis, I have had to put myself out there so they do not feel like they are missing out on the experience of Halloween, don’t get me started on how I think Halloween is just another “Hallmark holiday”. It is struggle not to pass my own insecurities onto my children. I have built up a thick skin (pun intended) but I am still human.

Truth is, I cannot imagine my life without ichthyosis. The experiences I have had have helped define me as a person but some days I just want to live my life without my skin being at the forefront of every exchange I have throughout the day. I promise you I have so much more to offer, all you have to do is start a conversation with me.

We as a society put so much emphasis on the way people look…Why? When did we decide that how a person looks determines their worth in this world. Truth is, beauty is more than skin deep. It is a person’s mind and soul that makes them worthy. My life has been filled with negative experiences, depression, anxiety, bullying and I can pinpoint in every case how it started because someone said or did something relating to my skin that made me feel less than. I always say I’d rather you ask questions instead of staring and assuming. People tend to fear what they do not understand, why is that? As children we are taught that kindness matters and we learn to celebrate all differences yet when we become adults we often forget simple things like the golden rule of treating others as we want to be treated.

Think about this the next time…Is it necessary to be said? Do I need to be the one to say it? Am I saying it from a place of love?

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